Happy Holidays

Wishing you all a very Happy Holidays from our family to yours.

The Morreale Family

Home Sweet Home

Hi Everyone,

We are finally home and with no surprise our last 5 days were not uneventful. As I mentioned in my last post Anthony was sick on Monday.....well Tuesday Julia was sick. Unfortunately due to her medical frailness she was admitted to Sloan as an in patient. She remained in patient until Thursday night so needless to say her cell infusion which was suppose to happen on Wednesday was bumped to Friday. And for those of you doing the math....yes we missed our flight home!! We had to change our flight to Saturday in order to get the last cell transfusion Friday. We are expected back in NY the second week of January for cycle 2. Really don't know how I'm going to get through it.....

It was quite the experience and really not what I expected. It was longer and much harder than I ever imagined. We met some great families with of course sad stories and unfortunately they were not as luck as us to make it home for Christmas. I hope all of them can find some way to have a wonderful Christmas despite being separated from their families......and the Ronald McDonald House will make sure of that. I can not take anymore of the sad stories. I get far to emotional and want to help all but being at the house I realized I can not possibly help everyone despite wanting too.

Julia has recovered from her gastric infection and is due at Sick Kids on Tuesday for follow up. She is booked to have a PET/CT on Dec 29th to see if disease is; gone, stable, or has progressed. NY doctors don't expect to see much change after only one cycle. Unfortunately we will not know until the beginning of cycle 3 if and how well this treatment is working, or even how long my cells are lasting. The idea is the longer my cells last the longer she can go in between cycles. This whole process is much more than we all bargained for. It is intense, long, with really no immediate answers. NY is talking about just keep going and going. Even talked about Julia's own cells potentially being ready for cycle 4. After seeing my bill for only 1 day I don't think we can keep going and going. I will speak with Julia's doctor here and together we will decide what to do long term.

On a positive note Julia's primary doctor in NY is amazing. Very similar to her doctor here and that definitely made things easier for both of us. She even called us today at home to make sure we made it home ok and that Julia was feeling ok. The whole team we dealt with really were unbelievable. I'm still very happy to be Canadian and have health care, but it really will blow your mind at the advancement in the US. From big things like test availability, quick results (things that take us 3 days to get back here are back in 3 hours there), resources, blood tests (we've had a lot of blood tests and there were ones I had never even seen before), to simple things like parent lounges and kitchens with free coffee, cappuccino, and juice machines. To the incredible clinic and in patient food system.....pick up a menu, fill it out for everyone with you, and drop it in the box with the time you'd like to eat and your meal is delivered right to you.....and good food......no "meal train"(u sick kids families know what I'm talking about!!!)

For now I really need to re group and relax, and figure out why NY was so hard on me.

I'm grateful and excited to spend a quiet holidays with my family and will think about the trip back to NY in the New Year.

I will keep you posted as I know more.

Thanks for your continued support it is very much appreciated.

Nadia

Quick Update from New York City

Hi Everyone,

I apologize for not updating the blog more often(that really was my intent), but this process has been much harder than anticipated and has really taken its toll on me both mentally and physically. Most of my energy each day is holding myself up and making sure I have no more ER visits (2 was enough for me). Not quite sure what has put me over the edge but whatever it is it has me weak, tired, sad, anxious, and I spend most days crying uncontrollably when I'm alone. The thought of coming back here in 3 weeks gives me heart palpitations. I think I'll need to get on some good drugs before going through another cycle.

Elio, my dad, and the kids arrived Friday and we spent Anthony's birthday here in NY together. It was so good to see the kids but quite honestly I did not have the energy for them. We did central park, Rockefeller center, and Times Square - and that's about it - they were done after all that. Anthony went to the NHL and all the toy stores and picked out his birthday gifts. The Ronald McDonald house even got him a whole bunch of gifts and we got him a big ice cream cake to share with the house. The house even gave him and Elio tickets to last nights NY Rangers game. Now he thought that was the coolest way to spend his 8th birthday. Unfortunately he spent all night and all morning throwing up and is crawled up in bed and has to board a plane in a couple of hours. Poor baby I hope he feels better soon, and that Julia doesn't get whatever he's picked up. The countdown is on.....% more days till we come home.......I need an uneventful 5 days. Julia will have her last cell transfusion of the first cycle on Wednesday. She will go back in on Thursday for her final lab work in NY and than off we go Friday back to Sick Kids and they will do the remaining tests over the next 3 weeks. After that Sloan would like to see her back her the 2nd week of January for cycle 2. Can't talk about this right now.........

I will try and update you all after Julia's last cell infusion. Otherwise we will talk to you all when we return. Your thoughts and prayers and words of encouragement are always appreciated.

Nadia

Update from New York.....never a dull moment!

Hi Everyone,

I will start by letting you all know that Julia is doing well. She has handled her 1st cell transfusion like the trooper she is and all her monitoring last week was good. She will have her 2nd transfusion on Wednesday and we are hoping and praying everything goes just as well.

Well for those of you who follow my blog you know that a week in NY could not go by without some sort of drama................On Saturday we were scheduled to visit some family in New Jersey. They had ordered food for our arrival and were even coming to NY city to pick us up, but we never made it there. I woke up on Saturday morning and went down to the kitchen to make myself a pot of coffee (like I do every morning). I met a mother in the lobby who was also from Toronto and who was going home that day. As I was talking to her I felt a little funny, didn't really know what just not feeling that well. We exchanged numbers and walked to the elevators together. As we were waiting at the elevator I told her I wasn't feeling well and apparently turned around to get to the chairs and down I went like a sac of potatoes. Fainted in the lobby of the Ronald McDonald House. The staff immediately called 911 and the paramedics rushed me to New York Hospital. The lady at the front desk called our room and told my mom she needed to come down to the lobby as they had someone who fainted. She left Julia in the room (alone) and ran down the stairs from the 6th floor. She said as she got to the lobby there I was on the floor. The paramedics insisted on taking me to the hospital as my blood pressure was really low. Julia was still connected to over night hydration and my mom does not know how to disconnect her. So as the paramedics are shoving oxygen prongs up my nose I'm worried about Julia and her hydration. Thankfully one of the mom's at the house went to disconnect Julia as I went off to the hospital. When I got to the hospital they were waiting. I could not believe how unbelievably fast things were. They did an ECG, put in an IV, started a bolus of fluid to get my blood pressure up and the doctor had already come in to see me in the first 10 minutes....talk about good service! My blood work was good and there were no major concerns. They believe I was dehydrated, exhausted, and that the stress caught up to me. Once they gave me fluid my blood pressure returned to normal and I felt better. They got me out of there as quick as they could. I felt very weak the rest of the day so I just crawled into bed and rested. I sure did scare the crap out of myself and my mom...who after I was feeling better gave me so much shit!! She says between me and Julia we are going to kill her!! I am feeling better but am so home sick and feel like I've been here forever.

The house is really good to the families and they always have something going on to keep the kids busy. Tonight is a pizza party in the playroom with Santa gifts and pictures. They also offer free Museum tours to the guests so I am hoping to take Julia one day this week or next. We will be at Sloan all day Wednesday and Thursday for sure and quite possibly Friday depending on counts.

I will keep you all posted on how the 2nd cell transfusion goes this week. I apologize for not contacting any of you but this has been much more difficult than I expected.

Thanks for all your support and prayers. Please keep Julia in your thoughts and prayers as she goes through the 2nd cell transfusion.

Nadia

Update from New York

Hi Everyone,

We arrived in NYC on Tuesday night after a very, very bumpy ride. I was terrified and puking in a barf bag the whole way here (longest hour of my life). Julia on the other hand was laughing her head off saying "faster, faster this is so fun". My little 6 year old rubbing my back telling me it was going to be ok. What a trooper!
After an interesting encounter with our first taxi driver in NYC who brought us to the wrong place and started taking our bags out of the car, as I was telling him he couldn't leave us there it wasn't the right place, we finally arrived at the Ronald McDonald House.
Early Wednesday morning we arrived at Sloan Kettering to start the next part of our journey. Everyone was ready for us and welcomed us with open arms. It was so overwhelming and things are quite different here than at home. Julia had about 30 tubes of blood drawn, her exam with her new doctors, and then at 2:45 Julia's first cell transfusion took place. The doctor hand delivered the cells and transfused them herself. As she was infusing them she told Julia "here are mommy's cells, she worked hard for them Julia". It was unbelievable to watch. The infusion was very fast but there was a 4 hour monitoring period after infusion. My heart was racing and I don't think I've ever been so scared. The pre meds knocked her out and I sat by her bed watching every breathe she took wondering if my cells would hurt her. She did very well and doctors were pleased. We were back there today for blood work and everything looked very good. We need to go back tomorrow for clinic and hopefully everything will still be ok. Julia is feeling good right now. Interestingly, on Wednesday morning before arriving at Sloan Julia's oncologist emailed me to inform me that Julia's EBV test from last week is positive for EBV in her blood. This is what we were waiting for all this time to qualify for trial. So looks like now was the right time to come to NY......strange how things just seem to fall into place.

The house................I am having a very hard time adjusting to the Ronald McDonald house. It is very nice and the people here (both families and staff) are very nice but it is so very sad. The house is at capacity (84 families) and a lot of these families have been here for months and months. There are even quite a few that have already been here for a year and still have a year to go ( I can not imagine this). I can not handle all the sad stories and most of the families who have been here so long can't even afford to buy food.....break my heart. Tonight the house celebrated the start of the holidays with the lighting of the Christmas tree in the lobby. The kids sang songs and Santa came to visit. There were speeches by all the suits about how this is the "house of hope" and how in here the house tries to let them be kids first not kids with cancer. I was crying the whole time and couldn't believe I was even here. Never in a million years would I ever have thought we would be in a position like this. You can't even imagine the world that exists in here.....its the stories you may read about but never really know about, and I feel like I am living in a very bad dream.......and that if I pinch myself hard enough it will all go away.

Julia's second cell infusion will be on Wednesday and than the last one on Dec 14th. If all goes well we hope to be home on the 16th, but the doctor has already told us she believes Julia will benefit from another cycle. This would mean we would only be home for 3 weeks and than need to return. .....can't even think about that right now.

Its only been 2 days and I am unbelievably home sick. I miss my kids tremendously and can't stop thinking about them. I miss my house, my family, my friends and just my life back home. Simple things that most people really take for granted (including myself before all of this). We feel so lost here. We haven't had any time to do anything in NY since we've been at the hospital most of the time but we hope to be able to do something fun over the weekend.

For now I am so grateful that Julia is well and seems to be handling everything very well. I pray almost every hour of every day that she can get through this with no complications and we can return home soon.

Thank you for the unbelievable support I have received from all of you. I will continue to keep you posted on how things are going here in New York City.

Nadia

Heartbreaking News........Off to New York for Trial

Dear Family and Friends,

It is with great sadness that I tell you that Julia has relapsed....again. On Monday doctors confirmed that the biopsy of her throat confirms that the PTLD is back. It is at a very early stage which is good. What is strange is that Julia remains EBV negative in her blood so it was a big shock to learn about the relapse. We have spent the last couple days trying to gain more information. She went into the OR for a gut and colon biopsy yesterday and today she had another PET/CT. The results for the biopsies will take a couple weeks. Today's PET/CT was very similar to the last - it uploaded in the throat although the findings in the lungs were worse than seen 4 weeks ago. We are not certain as to what this process is in the lungs - is it disease or is it infection? At this point it doesn't make much difference since we already have a positive biopsy. There have been numerous discussions taking place between us and the doctors and between the doctors here and the doctors in NY. The big question was do we go to NY? Since it is not under the circumstances that we expected to go to NY there was a go/don't go feeling. There was one strange thing from the biopsy which had doctors wondering if this was the right time. Along with the b cells (which have always been seen in the past), the pathologists also saw a number of T cells which is making everyone nervous. Unfortunately the medical world is not always sure what T cells mean when looking at cancer. Tonight Julia's oncologist confirmed that NOW is the time to go to New York. Although I think everyone is a little nervous they've decided to send us. Therefore we are leaving on Tuesday for New York and the trial (the first cell transfusion will be Wednesday). Doctors are trying to get us home tomorrow so we can spend some time as a family before going. So the plan is to try and get out of the hospital tomorrow, come back Saturday for bloodwork, and than be back Monday for the final tests prior to leaving.

I can not begin to explain how I am feeling right now. Completely overwhelmed and terrified. I only have a few days to get things organized and more importantly spend with Anthony and Emily so I can not be in touch with anyone. I will be gone for Anthony's birthday on the 11th and he will be devastated. Depending on how Julia is feeling we will try and bring the kids down to NY so we can spend Anthony's birthday together. Our lives have been a nightmare the last few years and seems we just cant catch a break. This disease is like a ticking time bomb that just keeps gaining power. I am feeling like the walls are closing in on us.

I wish I could say more but really I dont have the strength to discuss this any further...my head is going to explode. I will update the blog from NY and hope to have nothing but good experiences to report. Thank you all for your continued support and please keep Julia in your prayers. May God give her the strength to continue fighting.

Sincerely,

Nadia

Update On Julia

Julia was discharged on Sunday afternoon after receiving her blood transfusion and being monitored for a few days. On Monday night she spiked a fever. I organized drawing blood cultures and counts from home and sending it to the lab. It showed that despite being on the GCSF injections she still remains neutropenic (no counts). Her oncologist was so kind to bend the rules and allow us to remain home and follow from there. But by yesterday fevers persisted and it was time to come in......there was no more rule bending. So last night she was re admitted to Sick Kids and is under going further investigations. We had consults with both GI and ID today and everyone is sitting tight for last weeks biopsy results. There seems to be a very big concern or hunch that we could be looking at disease. Julia remains very weak and tired and it has been decided that its time for a feeding tube. So we will put it in and hope that she doesn't pull it out. We need this (and trust me this was a last resort), to get the calories in and help her gain some weight and feel stronger.

Saturday is Emily's birthday and I am so sad that it looks like Julia will be here. This will be 2 of 3 years Julia has been in hospital on Emily's birthday. As most of you know this has been an unbelieveablly tough ride the last 2 months and there seems to be no end in sight. I am worried, stressed, frustrated, sad, angry, and feel so displaced. The back and forth to and from the hospital, the luggage I keep packed at the side of my bed, the constant goodbyes to Anthony and Emily its becoming all too much to bare. I pray everyday that we are able to find out what is causing Julia to be so unwell and we can fix it soon.

I will keep you all updated on the situation as I can.

Thanks for all your support.

Nadia

Back At Sick Kids

Hi Everyone,

Julia is once again back at Sick Kids. In my last post I told you that she wasn't feeling well on Thursday and had spiked a fever Wednesday night after her biopsy. After speaking with her doctor it was decided that she should have cultures drawn and a CBC. So we arranged for the bloodwork to be done here at Markham Stouffville through her pediatrician. The office called with results and Julia's hemoglobin had dropped from 87 on Wednesday to only 71 (70 is transfusion). I immediately contacted her oncologist and as always she responded immediately. She agreed that this was a huge drop and gave me the option of going in to emerge or waiting till Friday morning and seeing her in clinic. I told her I was a little worried about the drop and the possibility that it could drop even further overnight. Her response "if your worried that's my cue to bring you in now, I'll call the fellow and let them know your on your way". So we packed a bag and off we went......thank god. When we got to emerge and rechecked her bloodwork her hemoglobin had dropped to 62 (down by almost 10 in 7 hrs). The panic began.......was she bleeding internally? Where was she losing this blood?). The doctor ordered blood and they transfused her immediately. The transfusion took 4 hours and I saw every minute of every hour all night. They re checked her blood as soon as the transfusion was done and her hemoglobin increased to 96. They rechecked it 2 more times that day and it was holding steady. ENT came to see her and confirmed that there was no way the procedure she had would drop her hemoglobin by that much that fast. They ordered an ultrasound of her belly and thankfully saw no blood or bleeding in her belly. What they did see was that her spleen is 2cm bigger than it was 2 weeks ago...........this could be big trouble.

Some good news...............Julia had a great day Friday and yesterday. After getting the blood transfusion she perked up and had tons of energy even ate a little. I haven't seen her feel this good in a long time. The hope was that they would let her go home yesterday but doctors did not agree with my plan. We will try and get a discharge today.

Its been a very very tough couple months as I watch Julia deteriorate with absolutely no answers. In the past she gets sick, we know why, we start treatment, and she gets better. This time its been watching her get sicker and weaker and have more issues each week with not being able to find out why. I am beyond frustrated and extremely worried about where things are headed. We can't get more than a week at home, and the worst part is that she develops new and different issues each time. I really feel like things are spinning out of control.

NY has confirmed that my cells are ready and have been frozen. They are waiting to hear from doctors here about Julia's EBV status. This week's EBV remains negative so we've bought ourselves at least another week. I told Julia's oncologist that I need her to stay negative until we figure out what is going on or at least she's feeling better and stronger. Can't imagine running into all these problems in NY. Wonder what a blood transfusion would cost there.....scary. We haven't even gotten there yet and you would not believe the stack of bills I've received for my cell donation....its absolutely crazy and makes me very thankful to live in Canada and have health care.

I am an emotional, nervous wreck right now and apologize for not responding to all your messages or being very brief in my responses. I need a little time to sort things out and most importantly need to have Julia home and feeling well.

I will keep you all posted on how she's doing and please keep her in your prayers.

Nadia

Biopsy Done.....Now We Wait for Results......

Hi Everyone,

Julia had her biopsy yesterday and all went well. She is in a lot of pain but recovering comfortably at home. It was a very emotional day yesterday as we waited and watched Julia cry about having to go into the OR. Her surgery was delayed by an hour which made things even worse for all of us. She cried and begged us not to send her into the OR. She kept asking for the "white, sleepy medicine". As she was doing her pre op assessment her temp registered 37.6 (border line fever for her). The nurse looked at us and said the anaesthetist may not bring her into the OR with a temp. She was not feeling well and I could see something wasn't right. The anaesthetist came to talk to us and I explained that this was the reason we were doing the biopsy (too find out why my kid was always sick and has fevers). The interesting thing is that Julia finished her oral antibiotics on Monday and as always 48 hrs later here came the fever. Everyone agreed that the benefits of going forward out weighed the risks. So Elio geared up in OR wear and walked her into the OR. We both walked her to the big OR doors and than I could not go any further. I watched as Elio carried her into the OR as she reached her arm out to me calling for me in tears. My heart broke as I totally lost it in front of the OR doors. I have been through this so many times but yesterday realized that this never ever gets easier and I can't take one more visit to the OR. The OR staff reassures you that they will take good care of her but really to hand your child over to strangers and not know what will happen in there is absolute torture and in my eyes we've done it enough.....NO MORE. As we were sitting in the surgical waiting room a family right beside us was pulled aside and told that something went really wrong in the OR with there daughter and doctors were working frantically to stabilize their child. The mother just about passed out and was shaking in disbelief. This is the first time ever in all my times waiting in the surgical room that I have seen this happen. I started to panic and realized that even in the simplest procedures with the best doctors anything could go wrong. Needless to say that it was the longest wait ever after seeing what this other family was going through. Finally after an hour and a half the doctor came out. He had actually taken pictures of the surgery (and boy were they hard to see), and showed us what he saw. The good news is that once he went in he did not see a mass (which he was expecting to see based on the CT), he did see an area on the side of the throat that looked abnormal so he took some samples and sent it to pathology. He also took some samples of other areas just to be sure. All in all he felt like it was good news that there was no obvious mass. Now we sit and wait for pathology results, which will take approx. 2 weeks.....torture. In the meantime Julia remains unwell and no one knows why. As I mentioned she wasn't feeling that well before the procedure so after was even worse. She was tired and complaining of stomach pain. Her oncologist decided to draw cultures and give her a dose of IV antibiotics to protect her for 24 hours in case she spiked a fever. And boy does she know Julia.....last night she spiked a fever...again. She remains unwell this morning and still has a fever so I will contact her docs and see what to do next. It was decided that she will go back on oral antibiotics until we have the pathology results. So once again she has to take more antibiotics (which she hates). We are also meeting with Infectious Disease next week to hopefully get some guidance from them. All these antibiotics can't be good for her. The other piece of news we got yesterday is that Julia finally has some of her B cells back (about 20%), therefore her oncologist will contact Texas about growing her own cells and shipping them to us for the future. Now that she has B cells the possibility of the EBV returning is higher therefore we tested it yesterday and await the results of that. If she's positive she will be ready to go to NY. I hope she remains negative long enough to figure out what's going on and hopefully get her better.

I realize that going to NY is where we need to go but you have no idea how lucky we are to have an oncologist like we do. This lady is the most incredible person I have ever met. She's not only brilliant but caring, compassionate, and kind, and she goes well beyond her call of duty and is always there for us. I don't know if I could do this and remain sane without her. She is the closet thing to God I have right now in my life. I trust her completely and value her expertise. She really is a saint. I will miss her while we're gone and wish we could bring her to NY with us. She has a calming about her and always makes me feel comfortable. I don't know what we will get in NY. The good thing about her is I know she will remain in contact and be checking up on Julia while we are there cause that's just who she is and what she does for her patients....incredible person.

As we wait for the EBV and pathology results I will be a little insane these next 2 weeks so bare with me. I know I have fallen off the radar with most of you but please know I think of you all and appreciate all your support.

I will keep you all posted on Julia's progress and the results once they are in.

Nadia

Quick Update

Hi Everyone,

Julia was at the hospital yesterday and it was a long intense day. It started with what I thought was just going to be a an ENT(ears, nose, throat) consult but to my surprise it was much more. Two doctors entered the room and proceeded to tell me that the CT shows something in the throat and its the same spot that uploaded on PET. I said you must be mistaken it was the PET that lite but CT showed nothing. The doctor left and re looked at that scan (at my request) and came back and confirmed that the scan shows that the right side of the throat is bigger and there's a ball like shape. He wasn't sure why the radiologist did not comment on this in the report. The next thing I knew I was being told Julia needed to have a biopsy to rule out disease. Her ENT doc was leaving that night and did not feel the surgery could wait so had already made arrangement for another surgeon to do it. In he came to introduce himself and have me sign all the consent forms. Therefore Julia is scheduled to go to the OR (AGAIN) on Wednesday morning. They will go in and look at the spot and take a sample to send to pathology. The pathology reports normally take up to 2 weeks to come back..........so needless to say the next 2 weeks will be agonizing. Then we headed to Oncology clinic and Julia has lost another 2 lbs. She is dropping weight so fast and has become so frail and weak. We are all concerned about the weight lose and may have no choice but to put in a feeding tube (Julia will absolutely hate this). The speculation of what this could be is driving me crazy.............is it a relapse of her PTLD? is it a new full blown Lymphoma? is it ebv negative PTLD? or is it nothing?

Julia's potassium was really high yesterday so we had to repeat it today and instead of driving all the way downtown we decided we would check it locally. To my surprise Markham Stouffville does not draw blood from a PICC line. So I had to go to Markham Stouffville and draw the blood myself from her line (I've never done this before) as the lab techs stood and watched me.

Things are very crazy right now as my days are consumed with taking care of Julia, trying to get food in her and my new job title....nurse!!! Absolutely crazy that 6 years ago if Anthony fell and scrapped his knee I would freak out and today I spend my days flushing Julia's PICC line, hooking up hydration, holding her down as her nurse gives her the injection (brutal), and now drawing blood and putting it in tubes......crazy life.

I will keep you all posted on how she does next week.

Nadia

New look

Hi Everyone,

I administer the blogsite for Nadia, and I just wanted to welcome you to a new look!

I have removed the messages gadget because it was being spammed so frequently, it wasn't even useful anymore. Please leave all messages in the COMMENTS section of each post. Comments are always appreciated. They let the family know that you are thinking about them, and Nadia can pass on your love and well wishes to Julia.

There are a few new additions to the site. You can join the Let's Help Julia Group on Facebook, the link is on the left side and now you can sign up for Nadia's updates through email.  You can also use your Google account to follow this blog.

As always, thanks so much for your support in Julia's fight.

Take care,

Ida

Home Sweet Home.....

Hi Everyone,

I am happy to report that Julia was discharged Sunday afternoon from Sick Kids and more importantly has remained home! She is still not quite herself but we are still trying to work that out. She is on overnight hydration and receiving daily injections (which her home care nurse is giving), to try and boost her counts. She will be back at the hospital tomorrow for an ENT consult, bloodwork, and clinic. We will see tomorrow's results if the injections are working. She may also require a blood transfusion tomorrow as her hemoglobin remains very low.

Julia's heart biopsy came back showing minor rejection (this is expected in every transplant patient). The good news is that its nothing serious that requires intervention. Her PET/CT showed some small lymphnodes in her lungs that also lite in the PET scan but doctors believe this may be from the pneumonia she had a few weeks ago. We have moved her to oral antibiotics for a 2 week course and will re scan her after this to see if there is any improvement. The puzzling piece is that her PET scan lite in her throat although CT did not pick anything up in that area. So once again doctors don't know what to do with this piece of information. Therefore we are seeing ENT tomorrow to see if then can shed any light on the situation. Especially because Julia is still not eating and is losing weight quite quickly. Hopefully they will have some ideas for the team. She will also have some special Rheumatology bloodwork drawn tomorrow to help guide doctors. Everyone is working hard to try and figure out what is making Julia feel so unwell. At this point they are thinking out side the box and running whatever tests they can to help them. Her bone marrow biopsy also showed that she is iron deficient and this is why her red blood cells are so low. Her last EBV remains negative which means she is not ready to go to NY. Sloan Kettering is ready for her and now we wait until her EBV becomes positive and off we go. At this point we test it weekly and wait for a positive. It may have been a blessing in disguise because I can't imagine being in NY while shes been so unwell. I just hope they figure out what's going on before we need to go to trial.

Although we are home things are far from normal. I feel like we went from being a prisoner in the hospital to a prisoner in our home. Julia is not well enough or strong enough to go out (nor can she be around anyone due to germs), home care is coming in daily, I have to hook her up to hydration every night, and it takes me 2 hours to convince her to eat. Even after the 2 hours I can only manage a bit or two of toast. At this point my days are consumed taking care of Julia and trying my hardest to help her feel stronger.

I apologize for once again being very distant from all of you but this latest hurdle has really taken its toll both physically and emotionally. I appreciate all the positive thoughts and encouragement but I'm finding it very hard to remain positive and optimistic at this point. I can not even begin to explain the fear I am feeling as I watch Julia deteriorate in front of my eyes. And cant help but worry that if we don't figure this out soon or Julia does not start to improve we could be headed for trouble. Part of me is also angry............angry at the constant battles that are thrown her way.....its just not fair. She has missed so much in her short life and instead of moving ahead and getting back some sort of normal life for her we continue to take steps back each year. It is already November and Julia has had 3 days of grade 1......another year passing her by.

I will continue to keep you all updated and hope and pray that in my next post I will be able to tell you all things are back to "normal" and Julia is back to herself. Thank you for your continued support.

Nadia

What a Night...............

Dear Family and Friends,

I would like to start by thanking everyone involved in organizing Julia's event Thursday and of course everyone who came out to support us. It was a fabulous evening filled with wonderful entertainment from Brian. It was very overwhelming and emotional to see how many people came to show their support and how we live in such a great community that really cares. To the many people involved in planning the event (who didn't even know our family), we are truly touched at all your hard work and generosity.

Now to Julia..........most of you weren't aware that Julia was discharged late Thursday afternoon and after only a few hours home and as I was scrambling to get ready for the event she spiked a fever. So as the show was going on I was on my blackberry communicating with her oncologist and my sister who was watching her. We managed to get through the night and I brought her to clinic Friday morning. No surprise..............she was readmitted to Sick Kids. We got less than 24 hours at home. She was scheduled to have a heart biopsy on Friday but earlier in the week cardiology postponed it a week to this Friday to give her some extra time to get better. Well now doctors are sharing our frustration with the constant admissions. It has been 5 weeks that we have been in and out (mostly in) of hospital. Therefore after many discussions and back and forth emails we have a plan. I got an email last night at 6pm telling me that Julia will go to the OR this afternoon for her biopsy. Although it is unlikely that all of this is related to rejection you just never know with Julia and no one is taking any more chances. She will also have a PET/CT (hopefully tomorrow or Wednesday) to look for disease or infection. The Infectious Disease team believes we may be missing an infection that is deep and that's why when she is on IV antibiotics her fever goes away and she feels better, but the minute we take her off she is unwell again. They are hoping the PET will light up in any areas of over activity and this will guide them on where to go.

WAIT....it gets better.....on Friday while in clinic waiting for a room I started feeling really sick. I tried to hide it but the nurses and docs could see something was wrong. I was alone and started to panic so I finally spoke up and told them that I had an excruciating pain in my back/side. Julia's doc advised me to go across the street and check it out cause it may be my kidney. Of course I did not go and just popped some Advil and Robaxecet and was hoping it will all go away. Quite the opposite within hours I could not walk and it hurt to even breath. My mom took me to Women's College and we waited 5 hours in emerge just to be seen. As I continuously called Elio too check on Julia. After waiting 5 hours the doctor comes in and says it could be stones or a pinched nerve and could I come back Monday for an ultrasound and CT. I looked at him and just about bit his head off. I said listen I can't come back Monday as my daughter may be having her scans on Monday so give me some drugs to help with the pain and let me get back to my daughter. He prescribed me a muscle relaxer and pain killer which basically knocked me out all weekend. The good news is that I am feeling a little better, the bad news is I can't take the drugs because I need to be able to function in here so lets hope the pain doesn't come back. Julia's situation is really taking its toll both mentally and physically on all of us. I really want to go home with a healthy child and live some what of a "normal" life.

It will be a busy week in here as we make another attempt to figure out what is going on. I will keep you all updated as I know more. For now please keep Julia in your prayers.

Thanks for you support.

Nadia

Luck Just Not On Our Side..........

Hi Everyone,

I'll start by telling you that Julia had been feeling really well the last couple of days so the plan was made on Friday to get a day pass for Saturday and see how she did at home for the day and than discharge this morning. She came home yesterday and started off fine but as the day went on she changed. She became more tired and started getting warm. Headed straight back to the hospital and when she arrived her temp was 37.6 - not bad but not great. Well this morning at 4am Julia spiked a fever.....6 hours before her scheduled discharge. So of course no discharge for us and back on IV antibiotics - the Sick Kids cocktail. I am so unbelievably frustrated and don't know what more to do.

The bone marrow results that are reported (some still not back)show that she is producing cells but they are being destroyed somewhere (same as last time). There are some elevated T cell clones seen in the marrow but unfortunately doctors don't know how to interpret these results. So we know that this isn't normal but don't know the link between this and everything going on. As an institution (and actually in the whole medical field) they do not have a good understanding of T cell clones in Julia's situation. The MRI showed that there is no hemorrhage or mass in the brain (thank god), all good news. It did however show an abnormality that is seen in kids that have been very unwell or received chemotherapy. Given that this was Julia's first head MRI there is nothing to compare it to. So basically another piece of information we will keep in our back pocket and follow. So incredibly frustrating to go through a number of tests (which all show something) and still be no further ahead. It is not any ones fault and doctors are always working hard to put the pieces of the puzzle together it's just not that easy. For now we are stuck in here longer on antibiotics. I will know more tomorrow when the team is back and hopefully I'll have more answers or a new plan. As you all know there is never a dull moment in our lives.................

Thanks for your continued support and I will keep you all updated.

Nadia

Tough Day

Hi Everyone,

Yesterday was a crazy day. Julia had her bone marrow and LP yesterday and of course things weren't as smooth as we would have liked. Julia was NPO (no food or drink) in preparation for the OR yesterday. Once she found out she could not drink she started panicking. She said "mommy I'm not going to that room am I? Tell me the truth mommy. Don't send me to that room." She is so smart that she knows when she is NPO that normally means the OR. As she cried and trembled with fear, begging me to tell her the truth and asking me to promise her she didn't have to go to sleep I looked her straight in the eye and lied. As my 6 year old looked at me to reassure her everything was going to be ok I had to tell her she wasn't going to "the room". Talk about the worst feeling in the world to have to lie to her. She was so anxious that the anesthetist had to drug her before going to the OR. She was so stoned but still managed to cry and beg me not to leave her. I carried her in and they pushed the "sleepy medicine" as I held her in my arms I felt her little body become completely lifeless. I laid her down on the bed and could barely compose myself as I watched them mask her as I left the room. While she was in there the doctors told me that the pressures in her brain were really high. When they do an LP they check for pressure in the brain before taking the spinal fluid. The norm is below 20 and Julia's pressures were 43. Once she came out and went into recovery we were rushed to Optamology to check if they could see the pressure behind her eyes. Thankfully there was no pressure seen in her eyes. In the late afternoon doctors came with the LP results. Looks like she has Aseptic Meningitis (viral meningitis - not bacterial which is the really bad one). Now its figuring out how and why she developed this. There are multiple reasons starting from the simplest (a viral infection or drug induced) to very serious causes like an infection in the brain or PTLD. She is scheduled to have an MRI of the brain today to try and help doctors figure out what's going on. Thankfully she is feeling ok considering. The bone marrow results are not in yet and doctors are anxious to see them and see if it can give them any further answers. She will also have a CT of her chest to look for evidence of disease. This new finding doesn't really give us any answers with what is going on with her counts, kidneys, etc. it just gives us something else to deal with and worry about.....unbelievable.

I can not begin to describe how I am feeling. It feels like being repeatedly kicked in the head when your already down. Instead of moving forward and towards discharge it seems like things are getting more complicated everyday and this admission may be a long one. I am meeting with Julia's oncologist this afternoon to discuss our plan and she will have bone marrow results by then which we will discuss as well. If we're lucky the MRI results may also be back.

I will keep you all posted as I find out more but for now please pray that the MRI is good.

Nadia

Deja Vu

Hi Everyone,

Well home didn't last long. I feel like it was yesterday that I was writing the very same post. Julia is back in hospital and things are crazy as usual. Julia went home on Wednesday night and continued to be unwell. By Sunday we had to bring her back to emerge and she was once again admitted. Her counts continue to be non existent and she remains very tired and weak. One new thing (like we need anything else), is that her kidneys are not functioning as they should be. Her kidney counts are 4x what they should be and she seems to be having some metabolic issues with her electrolytes. Looks like her body is producing too much acid. I had a long talk with her oncologist today and the doctors are completely baffled and admit they are missing something but what is it. It is not from lack of trying. They are working around the clock, consulting other doctors, dotting all their i's and crossing all their t's but are still scratching their heads. So the time has come to start searching. Julia will go into the OR under general anesthetic tomorrow for a bone marrow biopsy and a lumbar puncture (to check spinal fluid). They will look for disease, viral infections that could be suppressing the bone marrow, and a few other complicated things. This will be a brutal day as Julia does not always do well with anesthetic. These days are extremely heart breaking and emotional for me as I bring her into the OR and hand her over to the doctors as I watch them drug her to sleep as she screams and cries begging me not to let them hurt her. I give her a kiss good bye not knowing what will happen when I'm gone. Then I wait in the halls pacing and praying until they come out.........torture. After that she needs to have her CT that doctors were trying to avoid due to the excess exposure to radiation. The problem is she can't have the CT until her kidney counts come back to normal because they use contrast for the scan that is hard on the kidneys. We have involved Neuphrology (another team) to help guide us with the kidney problems. They have ordered a whole bunch of tests one which will include a special function test with nuclear medicine. And after all that she is booked to have a heart biopsy on October 21st. This poor kid has endured more visits to the OR in 6 years than we will in a lifetime. Julia also refuses to eat so we have started her on TPN (nutrition in a bag through her PICC line.....yum), as she has lost almost 2kg.

We spent yet another holiday in the hospital (Thanksgiving) but even though things are a mess right now I found myself thankful for a lot of things......Julia's strength, my other healthy kids, my friends and family, the wonderful team of doctors we have, the incredible support and kindness from all of you, and of course Julia and much more. So even in the worst of situations there are always things to be thankful for.

As you can imagine things are very busy, stressful and frustrating right now. Many of you have watched me go through this so many times before so you know I am completely emotional and physically exhausted right now and can't say much more than I have. I will update you all as I know more.

One thing I do want to mention is the benefit concert that is being held for Julia at Markham Theater on October 20th @ 7:30pm. There are so many wonderful people working so hard for this event and unfortunately with being in here I haven't been able to help much or talk to all of you about it. So I am letting you all know that the tickets are now on sale through The Markham Theater and we would love to see you all their to support Julia. Many, many thanks to all the people involved in this event. Your hard work, dedication, kindness, and generosity are very much appreciated and we are forever grateful for what you are doing for our family.

Sincerely,
Nadia

Update on Julia

Hi Everyone,

Today we have a plan......home. Julia has improved clinically and is responding well to the IV antibiotics. Her counts continue to be bottomed out but she has been afebrile for 3 days now. I negotiated with doctors to let us go home and continue the antibiotics at home. Julia's nurse will come in twice daily to administer the IV antibiotics at home and we will come back for clinic on Friday for follow up. She will get an antibody infusion this morning called IVIG in an attempt to boost her immune system. Crossing my fingers she does not have a reaction and we get home as planned.

This has been an extremely hard couple of days as I have watched a 4 year old little girl lose her battle with this deadly disease. Last night a beautiful 4 year old girl died (2 doors down from us), as her poor little body just couldn't fight anymore. Julia and this little girl have been in hospital together over the last year and were neighbours a lot of times. Her mother hugged me so tightly the other day in disbelief. I just broke down, there was nothing I could say to this poor mother as she watched her baby girl slipping away. She sat on her bed crying and screaming making sure her little girl knew how much she loved her. The life in here is beyond explainable. And if you've never been touched by cancer you can not even imagine what these poor kids endure and than to lose the battle after fighting for so long and so hard is heart breaking. I can not bare to see one more innocent child lose their battle. I have seen more children die in 3 years than most of you will in a lifetime. As I sit here crying for that poor mother I am overwhelmed with fear. Fear that this deadly disease can strike at any time and despite the fight these kids give its not always enough. How could life be so cruel. The mother said to me yesterday "how do I leave here without her". That comment hit me hard as I could not imagine coming in with your child and leaving without them. I realized that as much as some days I am tired of this place and just don't want to be here, without this place would mean I would be without Julia. The thought is too much to bare. So no matter how many days we spend here or how many times we keep coming back I realized that as long as I'm here so is Julia. I have spent a lot of days in the past 5 years asking God WHY? Last night I spent it in Julia's bed holding her as tight as I could thanking God for giving her the strength and asking him to always give her strength to overcome what is thrown her way. I am a complete emotional mess today.

I ask that you all say a prayer for that little girl's family as they deal with the most devastating event life can bring. I pray that God gives them the strength to go on. My thoughts and prayers are with them all.

I will keep you all posted on Julia and how her time at home is.

Sincerely,
Nadia

Julia Back In Hospital

Hi Everyone,

I wish I had better news but I don't. Once again Julia is back in Sick Kids. Julia had not been herself the last week or so and on Thursday afternoon her home care nurse noticed that something wasn't right. She found her heart rate low and blood pressure a little high. I called her oncologist and she asked me to bring her in to be assessed. As I was in the car I was thinking great another day wasted in emerge. Boy was I wrong. Within an hour of being in emerge Julia deteriorated and became very unwell. Doctors were scrambling to figure out what was wrong and everything was pointing to her heart. An emergency echo was done, high dose antibiotics were started and we were moved to the 8th floor. Julia continued to deteriorate overnight and into yesterday. She reacted badly to one of the antibiotics and vomited with every dose infused. Our transplant team came to see me and told me that there may be some subtle changes on her echo pointing to possible rejection. They ordered a special echo be done and if they saw the same changes they would rush her into the OR for biopsy. I stood over her bed panicking and pacing all day watching her heart monitor knowing there was nothing I could do, but prayed that my baby girl would fight. It is the worst feeling in the world watching your child deteriorate fast in front of your eyes and feeling so helpless. Last night cardiology confirmed that the echo was fine and her heart is stable. It was a huge relief.

Her chest xray is also still showing 2 spots in her lungs. The thought was that it was pneumonia but after a 10 day course of antibiotics the spots are still there and her symptoms continue. Now the team is focused on the lung issues. She is feeling a little better today and docs now believe everything may be related to what their seeing in the lungs. The fact that she improves once on high dose IV antibiotics after 24 hours tells them its bacterial and responding while on IV but once she comes off she gets sick again. There is some talk about a possible biopsy of her lung to try and figure out what exactly their dealing with. Although I am hoping this will be a last resort as a biopsy of the lung is extremely dangerous. As of this afternoon the thought is that Julia may require a full 2 weeks of IV antibiotics to totally clear the infection. It is the weekend so not much really gets done in here and talks probably won't pick up again until Monday.

I feel like I am living in a never ending nightmare. Every time I turn around there is some medical crisis to deal with. One of the nurses said to be yesterday that she doesn't think they've had a family here so much and for so long (3 years). We walk onto the ward and everyone knows us like family. We really have spent way too much time in this place. Even the cleaning crew, security guards, and Starbucks staff know me by my first name.....how depressing. My life is so chaotic. I am always cancelling appointments, plans, and shuffling Anthony and Emily everywhere. Poor Anthony had no idea until being picked up at school Thursday by another mother and told he had to go stay with Nonna again. I know the saying "God only gives you what you can handle", but honestly I'm not sure how much more of this life I can handle. Not sure how many more times Julia can battle back.

For now please pray that Julia continues to improve and we can get out of here soon. The lack of privacy, the constant pumps beeping, the every 4 hour vitals, the pathetic shower, everything about being in here is driving me crazy.

I will continue to keep you all posted on Julia's progress and hope that my next post will be a better one.

Nadia

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.

Thanks
nadia

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.

Nadia

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.

Nadia

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.

Thanks
Mary

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.


Thanks
Nadia

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.

Thanks
Nadia

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!

Mary

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 hurricane.......now 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.

Thanks
Nadia

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.

Nadia

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.

Nadia

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.

Thanks
Nadia

Scan Results

Hi Everyone,

I am happy to report that Julia's PET/CT on Tuesday was good. There were still a few lymphnodes but they were all within normal size. Our oncologist was pleased and this is what she expected. Based on these results we are stopping chemo and watching and waiting until we are ready for New York. We do not want to over use chemo and reserve it for when we need it. This makes me incredibly nervous but I trust in Julia's doctor, she is terrific. All the staff at Sick Kids have been tremendous. Those poor nurses who have to put up with Julia deserve metals. She sure gives them a hard time but most of them have the patience of a saint. I tell you they probably finish their shift exhausted after having Julia. I don't know why but Julia is not handling the hospital days very well. She fights everything and we spend our days controlling temper tantrums or negotiating vitals. We are so lucky the staff is good to her. I hope New York will be as good....

Elio and I gave our blood on Tuesday and it has been shipped to New York. For now we wait for word from New York on the results. Everything has come together and the staff at Sick Kids have done an excellent job getting everything in order for us. We are basically ready to go when they call for us. We expect that if Julia remains well we won't leave for New York until September.

Julia is home and feeling well. She is playing and almost doing what every 5 year old would be doing. She is however limited with her line, but she doesn't let that bother her. I look at her every day and cry for all shes had to endure. I'm grateful for how strong she has been but I fear the day when she can no longer be strong. It's funny I thought that when we got out of the hospital things would be more normal but I'm realizing that our lives will never be normal. I spend everyday living in fear and wondering what tomorrow will bring.

Yesterday Julia visited with a mother from Sick Kids who lost her daughter and when she came home she asked me some tough questions about where her daughter was. She asked about angels, and how you become an angel, and why did this little girl become an angel so small. Interestingly she said "mom, I don't know what they did to her?". When I asked who? she said the nurses and doctors. You could see she was thinking about it and trying to figure out what happened. Imagine.....talking to your 5 year old about death and angels. I cried so much during our conversation I was lost for words. How could I possibly explain such a cruel, unfair world we live in.

Thanks to everyone for your continued support without it I don't think I could get through this. I know I'm still really bad at returning calls but please bare with me. Things have been really busy and there are good days and bad. I will continue to keep you all posted on Julia's progress.

Nadia

Quick Update

Hi Everyone,

Julia is home and feeling good. She was at the hospital twice this week for clinic, blood work, and treatment. Home care comes everyday to administer her anti-fungal meds so its quite busy but being home is priceless. Julia received her last scheduled dose of chemo yesterday and will have her PET/CT on Tuesday. The hope is that she is already in complete remission. Based on how well she's turned around clinically her oncologist believes we should see a complete response.

We had our big video conference with Sloane Kettering in NY on Thursday and it went really well. They explained how the trial works and that so far they have seen a 75-80% success rate. The kids they have seen so far have been very sick with progressive disease and did not respond to chemo. Therefore Dr. Prockup (from NY) thought that since Julia is clinically well her chance of success is even greater. Sloane Kettering currently has 3 donors in their bank they could use for Julia. It was discussed that since Julia is stable and presumably in remission we should explore parental donation. Short term it makes no difference but long term it is preferred if Julia had me or Elio as the donor. Therefore we have registered Julia for trial and Elio and I have signed consent for ourselves to participate. We have an appointment Tuesday at the hospital and they will draw the first set of blood required. They will ship it to NY where they will do the first set of testing (this takes 4 weeks), to see if we are a good match. If one of us is then we will undergo plasmapherisis (similar to dialysis) to retrieve our T cells. They will then be shipped to NY and grown in the lab (this takes another 4 weeks), then infused into Julia. Therefore we are scheduled to go to trial in 8 weeks if everything goes as planned. If Elio or I are not a good match after the 1st set of tests we will go for donor cells in 4 weeks. Should Julia's scan only show a partial response than we will go immediately and use donor cells.

It has been recommended that we take our wish now while Julia is well pending the results of the scan. We do not have medical clearance to do the Disney cruise and must stay on land. We will wait for Tuesday's scan and than make some decisions after that.

I will update all of you on the scan results as soon as possible.

Thanks again for everything.

Nadia

Update

Hi Everyone,

I want to start by telling you all that Julia has improved clinically since starting treatment and she is feeling better. Her tummy is getting smaller, her fevers are finally gone, she's no longer in pain, and her counts are finally recovering. It's amazing that with only 2 weeks of treatment there's been such an improvement.

It's been a long, overwhelming and emotional 10 days. I will try my best to summarize what has happened and where we're going from here but my head is exploding so bare with me.

We had a big meeting with our Oncologist and social worker on Thursday. She told us that the pathology report from her neck lymph node biopsy has confirmed that the PTLD is back and that it is the same type and stage as the 2 previous times (this is good news, its not at a more aggressive stage). Given these pathology findings doctors assume that all the nodes that lite on PET (lungs, axila, groin and her spleen) have disease. Surprisingly the biopsy of her gut and colon did not find any evidence of PTLD. We are all confused and puzzled at this news, but we'll take it.

We have gone world wide in an effort to find options and have had an overwhelming response. Doctors from all over the world have responded with suggestions and ideas. Julia is the first kid at Sick Kids to suffer a 2nd relapse so there is no protocol for treatment, doctors are making one up. Doctors at Sloan Kettering Cancer Center in New York city have accepted Julia into their clinical trial. This is a trial in which they will give Julia donor T cell infusions in hopes that those T cells can fight the EBV and prevent the PTLD from coming back. The good thing is they will take her once she is in remission and use this experimental treatment as a preventative measure as oppose to using this as a treatment measure. The trial is 9-12 weeks with 3 weeks on treatment and 3 weeks off. The approx. cost we were told is $80,000 (assuming she is not sick and needing hospital admissions). At this point our doctors are recommending we go. They have no idea if this treatment will work but our doctors exact words to me were "if we don't try this, I think we will all look back and regret it". They are however recommending we go for 3 weeks of treatment and come back on the 3 weeks off. This will keep costs down and allow us to keep our Sick Kids team as our primary team and arrange tests and scans to be done here and shipped to New York. If we go for the full time we will lose our doctors here and have to find new doctors in New York. We have told our doctors to go ahead. We will go wherever they think is best for Julia. The next step is a video conference with New York this week or next. Then we will fly there for a consultation with the doctors running the trial. After that if everyone is happy we will be ready to go. They estimate that Julia will be ready to go to New York in 3-4 weeks. Because we have chosen to go to New York for trial we can not give intense chemotherapy so our doctor has decided to keep her on only this one drug we started and hopes she will be in remission after 4 weeks of treatment (that's 2 weeks away). If she is only in partial remission she will continue with another 4 weeks of treatments and than go to trial. If she doesn't respond by then doctors will be forced to give harder chemo. When going to trial the patient needs to go as healthy and strong as possible hence most trials will not take kids that have had too much toxicity from chemo so close to entering a trial. Our oncologist really believes that Julia will respond and achieve full remission with the 4 weeks of treatments. The problem is that this will most likely not be enough to keep her in remission for very long, so time is of the essence. This trial treatment is like flipping a coin. It's worked on some patients but not on others. Should the treatment in New York not work our doctors here do have back up plans. One being the 2 year chemo maintenance protocol that Leukemia patients follow after initial treatment. Another being continuing the drug she is currently getting maybe once every 3 months. These are all ideas that are being discussed and the scary part is no one knows which one to try or if they will work. We do not have the statistics in our favor right now. The only thing we have is hope, faith, prayers, and positivity. We need to remain optimistic and positive and take this one day at a time. Julia is an incredibly strong little girl and if anyone can do this its her.

There are a lot of things that need to be done and taken care of in the next few weeks and doctors are trying really hard to get Julia out of hospital this week so she can spend some time at home with her whole family before leaving. Our goal is to get her eating and drinking so we can have her home by mid week. She will return as an outpatient for the next 2 weeks of treatment. Our meeting talked a lot about quality of life and the teams here work hard to give that to all these children. It's important to all of us to have her be home and enjoy everyday life out of the hospital setting before leaving. Julia has no idea whats going on she just keeps saying shes going to New York City!

I would love to talk to each and every one of you but that just isn't possible. There's a lot to do and tons of stuff to sort out and most importantly I need to spend this time with my kids...all my kids together. I am emotional, frustrated, sad, angry, but most of all terrified. I am having a hard time keeping it together right now, and I really need to get it together and be strong for Julia.

Once again I thank all of you for your ongoing support and ask that you keep Julia in your prayers always.

Sincerely,
Nadia

Here We Go Again.................

Dear Family and Friends,

As most of you have already heard it is with great sadness that I inform you that Julia has relapsed again. This past week has been very intense and Julia has deteriorated very quickly. She continues to have high grade fevers, diarrhea, and her spleen is so big that her tummy is as big as Elio's! We have had to start giving her morphine for the pain.

On Tuesday she went to the OR to get her PICC line put in and all hell broke lose. When they extubated her (took the breathing tube out), she became very unstable. Her oxygen levels were extremely low and her respiration rates were 80 (20 - 30 are normal). It was complete chaos as doctors tried to stabilize her. There were 3 doctors, 5 nurses, the anesthesiologist, and the ICU team all in our 10x10 room. I have never felt so helpless and scared. She has improved but is still requiring a little bit of oxygen to help her. On Wednesday she had her PET/CT scan and by 5:00 our doctor was at our door with the terrible news. She sat down beside me and told me that the scan was very concerning and it looked like we were dealing with a relapse. The PET lite up in the neck, lungs, gut, and axillary. It also showed that there may be an infection going on in her lungs and this could be the reason for Tuesday's episode. We have increased the strength of her antibiotics in hope of getting rid of the infection. This morning Julia went into the OR for a gut biopsy, a colonoscopy, and to remove the lymphnodes in her neck. The procedure was about 3 hours and no matter how many times I wait in the waiting room it never gets easier. The procedures went well and she has remained stable. The doctors came to talk to us and informed us that the PTLD was seen in the colon. The gut and neck will have to wait for pathology reports. Since pathology can take up to 2 weeks and we don't have time to wait (because the disease has come on so quickly and aggressively), our doctor has decided to start some treatment as we wait for pathology results.

As this cancer is rare (only effecting transplant kids) the treatment options are limited and we don't have a defined protocol. At this point doctors are not sure what they will use to treat her. We are starting 1 chemo drug today (as I write this post),to stop progression of the cancer until pathology is back and they know exactly the degree of disease they are dealing with. This also allows doctors to consult other oncologists for suggestions. They have already contacted the UK and the US for advice and we are awaiting responses from both.

Our Oncologist just came to see us today to talk about what she's thinking right now. Her immediate goal is to get Julia in remission (which she doesn't see a problem with), the problem we face is the disease coming back. She has found a clinical trial in New York that Julia may qualify for so she is submitting a request today. She is still waiting to hear back from the UK and has contacted the European Oncology Board for suggestions. Whatever we decide it will require a maintenance or prophylaxis part once treatment is done. We may use the maintenance protocol that Leukemia patients use which is a 2 year protocol. Right now everything is still being worked out.

As I already knew the "talk" was coming I informed our doctor upfront that we need to go for cure and will not agree to palliative care. The complexity of what's going on is impossible for you all to understand and I do my best to keep you all informed without bombarding you with the medical terminology. I will say that we are in a very bad position and are fighting for life. The prognosis is poor and we need to do anything and everything we can to find options. Therefore I ask all of you to get the word out in hopes that somebody may know someone that can help. We are exploring all options and the more information and resources we have the better off we will be.

I want to express my gratitude to all of you for the overwhelming support, prayers, words of encouragement, food, etc. we have received. As you can imagine things are very busy here and we are in a touch and go position right now and until Julia is more stable I can not talk right now. I am an emotional mess and extremely distressed. Please know that it doesn't mean I don't appreciate all the messages but I can't possible reply (it would take me all day). When things are more stable I will be in contact.

For now, please please pray for my baby girl who is fighting for her life.

Sincerely,
Nadia

Quick Update

Hi Everyone,

It's been a really crazy week and I'm not really up for talking much about it. I know many of you are wondering what's going on so I will try and give you a brief update.

It is now day 12 of fevers and doctors still have no idea what the source of the fever is. We are on iv antibiotics and started anti-fungal meds, and still fevers. Infectious Disease is now involved trying to find the source. Some of the bone marrow results came in yesterday. It's showing that Julia's marrow is producing the cells but they are being destroyed in the peripheral blood. The million dollar questions is WHY? The next step is a PET/CT early next week to look for evidence of relapse, and than a gut biopsy after that. Julia's counts continue to be bottomed out and despite getting a blood transfusion last week we will likely need another transfusion tomorrow.

As the days go on its obvious everyone is thinking more and more about possible relapse. It's a sad and quite tone all around from everyone in here. This situation is all too familiar and I'm experiencing major deja vu. I refuse to give up and continue to be optimistic that this is all related to infection. And I will continue to believe that until told differently. Obviously I am an emotional wreck right now so I will be in contact when I pull myself together. I really do appreciate all the support and concern.

Sorry for the brief update and thanks for understanding. Please say a prayer for Julia as once again she is faced with challenges.

Sincerely,
Nadia

In Hospital Again.............

Hi Everyone,

I apologize for not updating you all sooner. I will start by letting you all know that Julia did get home the day of Anthony's communion. Although after only 2 days home she developed fevers again and was diagnosed with a really bad ear infection. She started high dose antibiotics for 10 days. During those 10 days she felt great. She finished her antibiotics on Friday and by Sunday the fevers returned. She was once again admitted to Sick Kids on Monday for fever neutropenia. She has 0 counts, and the medical staff is stomped. She has been really sick and out of it this admission and she is getting a blood transfusion as I write this post. We hope she perks up a little after her blood transfusion. Unlike other admissions all of Julia's blood counts are down, not only her neutrophils, but hemoglobin and platelets as well. This has me extremely worried. She is booked for a Bone Marrow Biopsy on Monday morning. Since this is now 5 days of fever they will begin a fungal workup which consists of CT scans. Julia's oncologist has been away so things are a little up in the air. The team on the ward isn't saying much (that's never a good sign). She is back tomorrow so I hope to have some clearer answers and a more concrete plan as to where we go from here.

I will keep you all posted when i can. Please like always keep Julia in your prayers.

Thanks
Nadia