Wednesday, August 31, 2011

Julia's Fundraiser

Hi Everyone,

Julia finally is getting her wish trip to Walt Disney World and we are thrilled for her!

We wanted to take a moment and thank everyone who purchased and sold raffle tickets as a part of Julia's fundraiser. Unfortunately we will be postponing the draw to September 15 to allow for Julia to be there for it and for all the last minute ticket sales that have been coming in.

Your patience is truly appreciated.

Again thank you everyone for your support!


Thursday, August 25, 2011

Off To New York City.....

Hi Everyone,

After many many back and forth emails and conversations it has been decided that I will fly to Sloan Kettering in New York city and do my cell donation there. Donating the cells here and shipping them to NY proved to be extremely diff cult due to scheduling and regulations with Canadian Blood Services. So Julia's oncologist has made arrangements for Sloan Kettering to do the collection of my cells. Therefore I will fly out Monday morning for 2 days. I am scheduled to be at Sloan first thing Monday morning for the donation and also meet with doctors and case managers managing Julia's case. Getting flights with the hurricane expected to hit NY Sunday/Monday has proven to be chaotic.............much like the rest of my life. There are 365 days in a year and the day I need to be in NY there is expected to be a if that isn't bad luck I don't know what is!! We tried to move around the dates for collection but it wasn't possible as the cell collection is a very complicated process to organize as many people are needed on board (from technicians to doctors to research lab techs). For those of you who know me well, you know I am terrified to fly so think of me as a board the plane and fly through the wicked weather we are expecting. My dad keeps joking with me that it will be a very bumpy ride on a small plane......yikes!! As you can imagine the last couple weeks have been so insane trying to organize all this and I only learned this afternoon that I needed to be in NY in 3 days. The emails, phone calls, paper work have been overwhelming. Julia's poor oncologist has been working around the clock to get this organized. She is absolutely wonderful and I thank god everyday we have a doctor as caring and compassionate as her, we could not ask for any better.

Julia has been feeling good these days. She is playing and fighting with Anthony and Emily like she should be. She will be at the hospital tomorrow for clinic, blood work, chest x-ray, and her weekly infusion.

I will update you all when I return from New York.


Monday, August 22, 2011

Disney Here We Come........

Hi Everyone,

After discussions with both our doctors and Children's Wish, we have gone ahead and booked Julia's wish to Disney. We are going from September 4-11, which means Julia will celebrate her 6th birthday in Disney. How perfect is that? Our original wish of September 29th didn't look like it was going to work based on us needing to be in NY. So it was pass it up again or go now. Everyone was a little hesitant when I requested to go, but thought that as long as I was comfortable with the PICC line and Julia's condition it would be ok. She will be closely watched between now and than and will have every test possible on September 2nd prior to departure. After years of missing out on so many things there was no way I was going to let my kids miss out on this opportunity. So for those of you who know me well, I am scared silly about going, but hopefully nothing Ativan can't take care of! The kids are so excited which makes all the anxiety worth it, I guess.

I am going into Sick Kids tomorrow (yes me), for my last set of blood tests and will be donating my cells on Monday. Another thing Ativan will come in handy for!!

Julia has been feeling good and all her bloodwork last week was almost perfect. Doctors are very happy with her progress but gearing up for what may be coming. Based on Julia's history (after stopping chemo), she usually starts to show signs of her immune system coming back at the 8 week mark, which means the return of the EBV. Her last chemo was July 8th, so we will wait and watch and hopefully Julia will once again prove everyone wrong. She had an ultrasound Friday and I will review the results with doctors on Friday. Julia's transplant doctor has decided to try and pull her off the steroids in preparation for NY. We have tried this twice and she has had rejection in the past, but NY feels like being off while receiving my cells will better the chance of success. So at this point we need to out way the risks vs. the benefits. We will stop the steroids once we return from our trip and biopsy her just before leaving for NY to make sure she is not rejecting.......makes me nervous but really nothing I can do but trust the doctors.....story of my life.

For now we continue to go back and forth with Sloan Kettering in NY to work out all the details of trial. You would not believe how different and difficult things are in the USA. I am also trying to learn dressing changes on Julia's PICC line, as I will need to do this while in NY.......not going so well. I am nervous and Julia is extremely anxious having me do it. Don't know how this is going to work. Should be interesting.

As always I thank you all for your support and generosity in helping our family get to NY for treatment. I will continue to keep you posted and will definitely post some pictures of Julia in Disney.


Thursday, August 11, 2011

NYC Ready For Us.............

Hi Everyone,

A lot of you have been asking on the status of the bloodwork Elio and I did last month with Sloan Kettering. I just got an email from Julia's oncologist today to tell me that they are ready for us. They would like both of us to donate our cells but of course want mine first. Therefore I will do some bloodwork tomorrow at Sick Kids and go into Toronto General next week to do the donation of cells. The collection process involves leukaphoresis - which takes all my blood out through one IV and passes it through a machine to collect only the T cells and then puts it back through another IV. Considering I just about passed out when giving blood last time I am extremely nervous and hope I can do this. Hopefully I will be allowed to pop a few Ativan before the process!! I just keep telling myself its needed to potentially save Julia's life, and keep thinking about all she's had to endure. Sloan Kettering will be ready for Elio once they have received my cells. This means assuming Julia remains well our departure date will be approx. 4 weeks from collection of cells. We will be travelling to NY in the next few weeks to meet with doctors before starting the trial.

Julia was at the hospital Monday for her weekly infusion and bloodwork and will return tomorrow for another infusion and more bloodowork. They tested her EBV counts (which up to know have remained negative due to chemo), and will hopefully get the results tomorrow. As soon as Julia's EBV returns she will need to go to NY, and I have a very bad feeling this weeks results will be positive - I don't know why just a feeling I can't shake. She has been feeling a little under the weather the last few days...........

Again, I thank all of you for your support and will keep everyone posted in the coming weeks.


Tuesday, August 2, 2011

Quick Update

Hi Everyone,

Julia was at the hospital last week and everything continues to be well. Her immune system is still down and she continues to get weekly infusions to boost it. She remains EBV negative (which means the effects of chemo are still in her system). Doctors expected that it will take approx. 8 weeks to clear the chemo. She is feeling well and enojoying her time at home.

I continue to battle with Sloane Kettering over my invoices. The lastest bill I receieved was for $130,000. Our doctor here is trying to sort it out but its amazing how things run in the US. We are so lucky to have health care in Canada. It's a real eye opener. The focus is on the money not the patient. I hope to have it all resolved in the next week or so.

Elio and I will probably find out next week if either of us were a good match for Julia. If so, we will proceed with donating our cells and ship them to NY. Since Julia has remained well our scheduled departure for NY is September (depending on our cell donation, and Julia's own cell count). It has been recommended that we go to NY and meet with doctors prior to bringing Julia there, so we are trying to sort out when would be best for us to go.

I want to thank everyone who has donated to Julia and/or bought raffle tickets for the raffle Mary is holding. It is very much apprecited and will help greatly with the medical expenses.

For now we continue to live each day not knowing what tomorrow will bring. Every week at the hospital I feel more anxious and more worried about what the future holds. I will continue to keep you all updated on Julia's progress/plans.