Home Sweet Home

Hi Everyone,

Wanted to let you all know that Julia is home from hospital and has finished her course of antibiotics. She got through the infection with no complications (thank God). She is feeling better and pretty much back to herself. She is glad to be home and back to somewhat normal life. As the year comes to an end I pray and hope that we can put everything that happen this year behind us and have a healthy 2011.

Julia is scheduled to have her repeat CT scan on January 17th. I will keep you all updated on Julia's progress.

Wishing you all a very Merry Christmas and Happy New Year.

Nadia

Back In Hospital

Hi Everyone,

Just wanted to let everyone know that Julia was admitted to hospital on Wednesday morning. She had been feeling unwell for 4-5 days with low grade fevers at night. After multiple e-mails back and forth with doctors they asked me to bring her in on Tuesday to clinic for some blood work. They examined her and could not find a source for the fever and all the standard blood work was ok. They decided to draw cultures because it had been 4 days of fever. On Wednesday morning I got a call from Julia's oncologist that Julia's cultures were positive for a bacterial infection in her blood and I needed to get her to hospital ASAP for IV antibiotics. I immediately dropped Emily off at my mom's and headed to the hospital. When I arrived they started an IV and began broad spectrum antibiotics. At this point they did not yet know what type of infection it was. Yesterday it was confirmed that the infection in her blood is strep pneumonia (one of the worst and most dangerous ones to have). The weird thing is that besides the low grade fevers she was showing no other symptoms and doctors would expect that anyone with this infection would have been really really sick??? She was sent for chest x-ray and echo to make sure the infection was not in her lungs or heart.
The treatment for an infection of this magnitude is 10-14 days in patient IV treatment. When I heard that I almost died. I have no idea how I spent 6 months in here because 14 days feels like a lifetime. Further tests showed that the bacteria is sensitive to Penicillin and since this is available orally I have negotiated with the doctors (or more like begged them)to let us do some of the treatment at home orally. As it stands they are considering the possibility of letting her go home Monday or Tuesday and finishing treatment orally IF Julia remains well and all her blood work is ok. I will not hold my breath and believe it when I'm on my way out of here.

At the same time both Anthony and Emily are really sick and once again I am not able to be there for them. Being back here is horrible. The small stuffy rooms, the lack of privacy, the stupid machines beeping all night, the constant nurses in and out of the room all night long, it all sucks. I am climbing the walls in here and it really brings back way to many bad memories. I need to get out of here.

I will keep you all posted on how Julia is doing and when we get out of here.

Thanks
Nadia

So Sorry

Hi Everyone,

I want to start by apologizing for the long delay in updating Julia's site. It has been a very busy few months. Things have been very up and down and we have been very busy trying to get Julia back on track. We have had numerous follow ups and are trying to get her stable on her immunosuppression drugs. Quite frankly I now believe in post traumatic stress. I think I am feeling more now then when we were in the hospital. There are days I can't believe what happened. There are days I realize how close we came to losing her. There are days I realize how much time I missed with Anthony and Emily. There are days I just want to forget everything and not think or talk about it.

We are really feeling the impact with Anthony. He is so emotional, angry, confused, and insecure. It has been very challenging trying to take care of Julia and also trying to sort things out with Anthony. Unfortunately Anthony is still having to take a back seat while Julia continues to be front and center. Anthony has been effected more than we ever realized.

Overall, Julia is doing very well. She feels good and is now back at school. She is loving school and enjoying being able to do normal things. She has had weekly visits to the hospital but doesn't seem to mind since she knows she gets to come home. Her scan which she had in early October was unchanged from the one in July. At this point doctors were ok with that and decided to remove her line and keep a close watch. She will have a follow up scan in January to make sure things are ok. She continues to get monthly antibody infusions to help prevent relapse. For now we wait, watch, and pray.

Our real battle has been from a heart transplant side of things. We are having challenges getting Julia at the right level with her medications. She continues to be on steroids until we can be sure it is safe to take her off. At this point we do not have a good plan and are working with doctors to determine what is the safest thing for Julia. We need to protect her heart but at the same time we are trying to avoid causing a relapse by keeping her over immunosuppressed. The steroids are not the ideal thing to be on with regards to the PTLD. We have had multiple plans but they keep changing weekly. Our latest plan is to keep her on the steroids until January and then start weaning her and biopsy her in February.

Julia started having severe leg pain about a month ago and was unable to walk. The immediate fear was a tumor but after testing that seems to be unlikely. Her x-ray did show some damage in her left knee and a growth discrepancy between legs. She had an MRI last night and we are awaiting results. It was a 90 minute MRI and she was so brave until they had to poke her for an IV and then she freaked out. It is so hard to see her so scared and fed up with all the poking and prodding. As a parent it is so hard to see your child suffer and not be able to help. I can't make them stop because she needs to have these tests done in order to make sure she's ok. Last night I really just wanted to pick her up and tell everyone to leave her alone. Once we got home she was fine and had already forgotten about the pain. Thank god she is so tough and can easily brush things off.

Like I said earlier I really apologize for not updating sooner but emotionally I am feeling so overwhelmed right now. I am consumed with Julia's care and so scared of missing something that all I do every night is go through all her test results. I feel like I am second guessing myself some days and I don't know if I am coming or going. At this point maybe I need to go on meds!!!!

I promise to keep you all updated sooner.

I want to thank all of you for your on going support it really means a lot.

Nadia

Quick Update

Hi Everyone,

I must tell you that this has been an extremely hard few days and I am having a hard time right now. I did however want to let everyone know about the test results as many of you have been asking. Julia's scan on Friday was ok (only ok). There was no immediate concern but there were things that will require follow up. Mainly the scan showed some enlarged lymph nodes in her chest (bigger than previous scans). At this point we will do another PET/CT in approx. 8 weeks. After receiving that news on Friday, today at 12:30 I got a call from the heart transplant nurse informing me that Julia has rejection on her biopsy. This was a total surprise and no one (not even doctors) expected this. I had to get to the hospital by 2:00 so Julia could receive IV steroids for the rejection. She will receive them for 3 days. She is being admitted tomorrow for a scope on Thursday due to the persistent tummy issues she is having. I really have no idea what the plan is right now and will get more answers this week and next. I can hardly believe this is happening. We just can't catch a break. I apologize for the brief update but I am in no mood to go into details as I haven't even absorbed the results myself. I will however let you all know when I receive more information.

Thank you and keep Julia in your prayers.

Nadia

Quick Update

Hi Everyone,

Julia has been home now for 3 weeks and is doing very well. She is still on overnight hydration but we will attempt to take her off very soon. She is going to clinic on Friday and will have her biopsy and scans next Friday. Depending on the scans and how comfortable doctors are I will try and negotiate taking out her PICC line so she can enjoy the summer. We would also like to plan her wish trip ASAP.

Julia went to school today, her first day in 6 months. She was so happy and excited that she got up at 5:00am and asked me if it was time to go to school. Today at St. Julia's was an award assembly and the school presented Julia with an award for courage and bravery. She was so cute as she walked to the front of the gym to accept her award. She gave her teacher a big hug and then came over to me and gave me a big huge. When we asked her tonight what she got the award for she said "because I am brave mommy". She also said "did you hear all those people cheering for me mom, it was so loud". Adorable. On a sad note she asked me if she would be able to go to school next year for the whole year or if she was going to get sick again. I was lost for words. How do you explain to a 4 year old what all this means. I hope and pray that she will be able to attend the whole school year next year.

Thank you for your on going support and I will keep you all posted on next weeks results.

Thanks
Nadia

Quick Update

Hi Everyone,

Julia has been home for a week now and she is doing well. She goes to clinic twice a week for now which means we spent more time last week at the hospital than home. Her counts were bottomed out and she needed to get a platelet transfusion last week. Because her blood work was a little off a condition of staying home was to go on overnight hydration for 12 hours. Her home care nurse comes every night to hook her up to the hydration and every morning to disconnect her. The good thing is she was able to get her a portable pump so she is able to be mobile while receiving the hydration. I feel really bad for her as she is a little confused as to why she has to be hooked up at home. Hopefully she will begin to eat better, gain some weight, and be able to hold her own levels so the hydration won't have to stay on too long.

She will be back at the hospital on Friday for Oncology clinic and we will meet with the heart transplant team next Thursday. Now that her chemo is finished she must have some cardiac testing done (yes more invasive testing). Her heart biopsy and CT scan have been confirmed for July 9th. This will be the day that will tell all. If she is in complete remission and whether or not she has any rejection going on. It feels like we just get over one thing only to wait anxiously for the next.

Normally the PICC line would come out 3 months after treatment ended but because Julia relapsed 4 months after treatment and 1 month after pulling the old line doctors have already told us that they will be in no rush this time to remove the line. This puts a damper on my plans to get her on her wish ASAP. As I've learned (the hard way) this year you never know what tomorrow will bring. I was hoping to get her on her wish while she is feeling her best. We will wait and see what the tests show on July 9th, and then I may have to negotiate with the docs.

The last week has been really busy trying to catch up on the last 4.5 months and adjusting to being home again. The kids are also adjusting to being all together again. Especially Julia who is use to having my undivided attention the last 4.5 months. Anthony and Emily want all my attention (and rightfully so), but Julia will not have it. It's a real juggling act, and a fine line between playing favorites. I guess it will just take some getting use to for all of us.

I thank you all for your messages and e-mails welcoming us home. I look forward to being able to spend time with all of you very soon. I will keep you all posted on how Julia is feeling.

Thanks
Nadia

Home Sweet Home

Hi Everyone,

I am happy to report that after a very long 4.5 months at Sick Kids Julia was finally discharged today and I am writing to you all from home. This did not happen without a little drama first. The plan was to be discharged today if all was well with her blood work. We discussed the plan this morning in rounds and it seemed everyone agreed with the discharge, although we did not have Julia's blood work back at this time. I left the floor to get a coffee and as I was returning to the unit all the docs and nurses were starring at me with this very sad look on their faces. I knew.....the blood work wasn't good. The doctor told me that Julia's blood work was a little off and she needed to get some hydration for a few hours and then repeat it. By this time it was already 2:00 in the afternoon. The repeat blood work came back and although it had improved slightly it wasn't great. Thank god we have had the same fellow (Dr. Kevin as Julia calls him), for the last 4.5 months and he so wanted to see us go. We all starred at each other wondering what we should do...stay or go. The suggestion was to stay and watch how she does but Dr. Kevin could see the disappointment in my face and looked at me and said "I want you guys to go home". We both smiled as he rushed to print and sign our discharge papers. It was a very emotional goodbye. All the nurses said bye and gave us hugs and were really happy to see us go but at the same time really sad. Since we have spent so much time there we really had developed quite a bond with many people and truthfully I saw more of these nurses and doctors then the rest of my family. The one condition of our discharge is that we return to clinic on Wednesday to check Julia's blood work.

Julia completed her last and final round of chemo last week. She was vomiting the first few days and then developed high fevers on day 3. The fevers lasted the full 5 days of chemo and then she turned around. Considering how sick she felt she really turned the corner quite quickly (thank god). Her counts have totally bottomed out and normally you would wait for count recovery before coming home but because we've been there so long and Julia has been clinically well the decision (with a little begging) was made to let her go home and count recover. We will need to return 2x a week to clinic until count recovery (probably the end of June). The only problem is that since her counts are bottomed out if she develops a fever or feels unwell she will have to be re admitted.

Now we sit, wait, and watch. Julia will have a PET/CT scan along with a heart biopsy on July 9th. The scan will confirm if she is in complete remission and the biopsy is to check that her heart is fine after chemo. Going forward our next challenge will be balancing the immunosuppression to make sure her heart is fine and at the same time we are not over suppressing her allowing the cancer to come back. This will be a very challenging balance since Julia has proven to be a child who suffers from rejection. Since this was a relapse for Julia doctors will be watching her very closely.

This has been an incredibly hard year. I have missed so much of Anthony and Emily's life that I will never be able to get back. In the hospital I lived each day battling new challenges Julia faced and really fighting for her life. Now that I am home I live in fear that the disease will return. I hope that in time I will be able to relax and resume somewhat of a normal life. For now I spend my time worrying and wondering what will happen next. For those of you who know Julia she is an incredibly strong little girl with such determination and will to survive. I pray everyday that this is the end of hard times for her and our family, and hope that life from here on will become easier (we really need to catch a break).

I know I have thanked you all before but I really can't express how much all your support has meant to us this last year. Without all your thoughts, prayers, and support we would not have been able to do this alone. It's because of good family and friends like you that we were able to survive. Thank you, Thank you, Thank you.

I will keep you all posted on how Julia is doing, and I promise that once things settle down I will return calls and e-mails. Please continue to pray for Julia that she remains strong, brave, and cancer free.

Sincerely,

Nadia

FUNDRAISER with Passion Imports

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Update on Julia

Dear friends and family,

I apologize for not updating you all sooner but it has been a crazy couple weeks. As some of you know on May 13th (my dad's birthday and the day Julia was diagnosed last year), Julia got to go home. The plan was to stay home until Monday and attend her healing mass, but of course that didn't happen. After only 18 hours at home Julia developed a fever and had to return to the hospital and was started on antibiotics. The strange thing was that her counts (which were almost recovered), had bottomed out again. We have spent the last 10 days waiting and waiting for count recovery. She will begin chemo tonight despite not being fully recovered and she will undergo a bone marrow biopsy tomorrow to see if we can figure out why her counts bottomed out after recovering.

On Friday was PTLD rounds, this is where all the teams; oncology, bone marrow transplant, heart transplant, and infectious disease meet to discuss each case. Julia's oncologist came to see me late Friday afternoon to advise me that in rounds the teams decided they would like our family (me, Elio, Anthony, and Emily) to get tested to see if we are a bone marrow match for Julia. Therefore on Monday the four of us will meet with the BMT team and get tested. As you can imagine this came as a complete shock since we have never discussed this in the past. The idea is that if we get into trouble in the future (another relapse) the bone marrow team will already have our information and know if any one of us is a match for Julia. Although bone marrow transplant is not the plan for us right know (and hopefully ever), it's scary just thinking about it.

Julia has just begun chemo as I write this post, I hope and pray she will stay well and we can get out of here soon. If all goes well we could be home in a few weeks.

Although I was not able to attend the healing mass I heard from multiple people that is was wonderful. People could not say enough about how beautiful it was. I want to thank St Julia's school, in particular Mrs. Lowrie, Mr. Beaudry, and Mr. Grant for all their hard work. I would also like to thank St. Patrick's church for performing a terrific service. I would also like to thank all of you who attended, it means so much to see all the support from friends, family, and even strangers. Wish we were there.

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

Thanks again for all the support.

Nadia

Update on Julia

Hi Everyone,

Julia's fevers are gone and she is feeling much better this week. Her counts have bottomed out and are not yet recovering. She has required frequent platelet and blood transfusions the last week. Once she has count recovery she will begin her
5th and final cycle of chemo. The expected start day will be May 27th or whenever counts have fully recovered. Hopefully she will count recover a little early so she can begin chemo. The 5th cycle is identical to the 4th, so we expect that she will have fevers and feel unwell for the first week. If all goes well after the 5th cycle we will finally be ready to go home. She will have a heart biopsy and PET/CT scan 4-6weeks after finishing chemo.

Now that we are nearing the end of treatment I am getting very nervous about what will happen after treatment. Doctor's have looked into a trial in Texas which will hopefully help prevent Julia's EBV levels from rising which will help prevent the PTLD from returning. The EBV virus is found in our B cells and our T cells are what help control the B cells from proliferating and causing the cancer. Because Julia is on immunosuppression for her heart her T cells are very weak and unable to control the B cells properly. The trial in Texas (which is not available in Canada), would infuse donor T cells into Julia giving her healthy strong T cells to keep the B cells under control. The goal is to keep her EBV under control and hopefully prevent another relapse. The trial is not yet open but hopefully will be available later this year. Our oncologist has been in contact with doctors in Texas and they have agreed that Julia would qualify for this study. Since the trial is not yet recruiting our options after treatment are very limited, leaving us only able to watch and see what happens. We have decided that if Julia's EBV levels rise we will reintroduce an antibody/chemo drug (Rituximab) weekly to suppress the B cells. I know this all sounds very complicated but as you can see the real test now is what will happen once Julia is off treatment???? We remain optimistic that Julia will do well and remain in remission therefore not needing any medical intervention.

Thanks again for all your support, and I hope(if Julia is well), to see you all at the healing mass on Saturday.

Nadia

Update on Julia

Hi Everyone,

Julia started her 4th cycle of chemo on Wednesday and it is hitting her really hard. On this cycle she receives chemo for 6 days straight 24 hours a day, and she is introduced to a new chemo drug which she has not had in the past. On Friday she spiked a 40.3 degree fever and Tylenol isn't working. She has had high fevers now for 3 days and is vomiting despite being on 2 anti nausea medications. Her counts are dropping and she may require a blood and platelet transfusion early this week. All she has done for 3 days is sleep and "grow up" as she calls it. Since her fevers are so high and we can not bring them down doctors have stared 2 antibiotics to cover her. If these fevers are chemo related they expect that she will feel like this until at least Wednesday when the chemo is done. It is so hard to see her like this and not be able to do anything to make her feel better.

Please keep her in your prayers during this tough week of chemo, and pray that she feels better soon.

Thanks
Nadia

Healing Mass for Julia

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

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

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


Thank you,

Mary

Good News

Hi Everyone,

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

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

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

Thanks for everything.

Nadia

Update On Julia

Hi Everyone,

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

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

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

Thanks
Nadia

Biopsy Results

Hi Everyone,

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

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

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

Thanks
Nadia

Quick Update

Hi Everyone,

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

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

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

Take care,
Nadia

Easter at Sick Kids

Hi Everyone,

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

Thanks,

Mary

What a Nightmare

Hi Everyone,

This last week has been the worst week ever, I don't even know where to start.

As I mentioned in my last update Julia had been having fevers for more than 5 days. So on Wednesday they sent her for a CT scan to look for fungus (once again). They didn't see any fungus but what they did see was fluid around her heart and lungs. They ordered an echo to confirm the fluid around her heart. About 10 minutes after the echo was done our transplant doctor came to see us. As soon as I saw her I knew something was wrong. She told me that she was not happy with the echo and that she suspected that there may be some rejection going on. She started her on high dose steroids, put her back on her immunosuppression, and told us Julia would go for biopsy the next morning. Thursday morning Julia went into the OR for her heart biopsy, half way through the procedure the doctor came out to tell us that there was so much fluid that she felt they needed to put in a chest tube. They paged all our doctors and one by one they entered the OR. The surgeon came out and had us sign consent to put in a chest tube in order to drain all the fluid. So Julia came out of the OR after biopsy with this huge tube sticking out of her chest, and she still has it. Friday was a very long day as we anxiously awaited the biopsy results. Finally that night at 7:30pm the doctor called to tell us that the biopsy confirmed that Julia had rejection. She felt that she was already on the right treatment and we would wait and see what the echo showed. On Saturday Julia started having arrhythmia's so an emergency ECG and echo were done. The ECG confirmed that their were some arrhythmia's happening and the echo was unchanged. Because of this Julia was moved to the ICU for closer monitoring and started on a more powerful drug to stop the rejection. Julia remained in the ICU until last night. She has had no more arrhythmia's and yesterday's echo showed huge improvement. Doctors feel that the rejection is under control and she is out of danger at this point.

Yesterday afternoon I had a meeting with our Heart Transplant doctor and our Oncologist. Basically most of the questions I had could not be answered. Doctors do not know why Julia has experienced rejection while on chemo, they have never had a patient have rejection while receiving chemo. It makes no sense, and there are no good answers, all it proves is that Julia will need to stay on her immunosuppression drugs while receiving chemo. The plan from Heart Transplant is to do weekly echos and re biopsy in 2 weeks to make sure the rejection is gone. From the Oncology side of things we have taken a few steps back because of the episode of rejection. We have had to go back and repeat Cycle 1. We have started this today, and will have a lumbar puncture with chemo tomorrow. We will repeat cycle 1 (the reduction stage), and then jump back to cycle 3. Unfortunately we have had to make the protocol up as we go along for Julia. We have had to take out one of the chemo drugs because it is hard on the heart, and oncology is not comfortable giving it to her.

As you can see things are very confusing. Right now we are really stuck between the heart and the PTLD, and unfortunately in order to help one we could comprise the other. We are all in agreement that the heart is priority right now. This episode of rejection could have cost us the heart and although we were able to catch the rejection in time (thank God), we have potentially caused harm to the PTLD. Julia's oncologist is amazing, and I am fully confident that she will come up with the right plan for Julia. We will all work together in order to do what's safest for Julia.

Once again Julia has proven to be the exception, but this time she really has everyone puzzled. She doesn't follow the rules, she makes them up as she goes. I thank God everyday that she is so strong because this is what has and what will get her through all the obstacles that come her way. The last week has been incredibly hard, and being back in the ICU was devastating. You can imagine that with a total of maybe 5 hours sleep in the last week, no eating, way too much coffee, I am absolutely physically and emotionally exhausted.

I am sorry to be ignoring everyone right now but I need time to re energize as I feel completely defeated right now. I do ask that you all continue to pray for Julia as she continues on this long and hard road to recovery. And if possible please ask that she get a break some time soon....no more complications!!!!!!

Sincerely,
Nadia

Update on Julia

Hi Everyone,

After reporting on my last update that Julia was well and had not developed any fevers.........on Tuesday Julia developed high fevers which made her feel really crappy this week. She was once again started on antibiotics and put into isolation. She also tested positive (again), for C-diff (a stomach infection) and began different antibiotics for the infection. Her counts totally bottomed out this week and she required a blood and platelet transfusion. On a good note her counts have quickly started to recover and she should have total count recover this week. This will be just in time for her next cycle. She will start her next cycle of chemo next Tuesday.

I don't have much energy to write tonight as the days are turning into weeks, turning into months, and things are really getting to me. It feels like we've been in this hospital forever and when I think about it we still have a long way to go. Elio and I really want to thank everyone for all your help. Your cards, e-mails, food, and visits have been very comforting. I will keep you posted on Julia's progress this week.

Thanks
Nadia

Quick Update

Hi Everyone,

Julia will finish her first week of high dose chemo tomorrow. She did exceptionally well on Monday and Tuesday, but starting feeling a little sick on Wednesday. She had some vomiting and is suffering from stomach aches and headaches. She is getting a little weaker and more tired each day as her counts drop. She will probably be bottomed out by tomorrow and most likely need a blood transfusion tomorrow. She is feeling exactly the way doctors expected and thankfully she has experienced no major side effects or complications. She has had no fevers or mouth sores yet, although her hair has started falling out. Overall, she is doing well given the circumstances, and hopefully she will continue.

Julia is a fighter and believe me she has had to fight since 6 months old. It is amazing to see how strong this little girl really is. As I watched her last week with at least 8 lines going at once with pre chemo drugs, then chemo after chemo, and then post chemo drugs my head was spinning. I was sick just watching everything that had to go through this little girls body. But not Julia.......she continued to be feisty, bossy, and she made sure to tell the nurses exactly what she thought of them (good and bad)!!! This incredible little girl has had to endure more in 4 years of life then most of us will in a lifetime. It is her strength and stubbornness that is my inspiration.

It's been 7 weeks and things are starting to get to me. The lack of sleep, the lack of privacy, and most importantly the lack of time I've gotten to spend with Anthony and Emily. Although I know that this is where I need to be and that right now Julia needs me more than anyone, I can not help but feel guilty for leaving Anthony and Emily. I keep thinking about all the time I am missing with them, and that I can never get it back. I don't know why our family has been tested over and over again but I hope and pray everyday that at the end of all this we will get the much needed and deserved quality time all together.

Thanks again for all your support and I will try and update you all weekly. In the meantime, please keep Julia in your prayers.

Nadia

Update on Julia

Hi Everyone,

Just a quick update to let you all know that Julia finished her 1st cycle of chemo yesterday. She did very well just like doctor's expected. The high dose steroids made her crazy, and she was extremely angry and violent towards everyone including nurses. Her CT scan showed improvement and doctors are very pleased that she's showed quick response to treatment.

Tomorrow will be the start of our rough ride, as Julia begins cycle 2 of her chemo. This is the "induction stage", where she will start high dose chemo and begin feeling unwell. She will receive one 6 hour chemo tomorrow, have a break Sunday, then get 3 high dose chemos Monday, 2 more on Tuesday along with a spinal tap (chemo in her spine), and one more on Wednesday, Thursday, and Friday. This will be a tough week. Doctors are expecting that her counts will bottom out by week's end, and total hair loss by mid March

On a funny note, when I told Julia that she would be losing her hair, she asked me why. I told her that it was because of the medicine she will be getting. She said "like Zoe?" (a hospital friend). I said yes, and she said "ok mom". I asked her if she wanted to cut her own hair. At first she said no, but as the day went on she changed her mind. It was so cute I gave her a pair of scissors and she stood there asking me "mom, are you sure it's ok?". She had so much fun giving herself a haircut.....it's a little uneven but it's cute.......and most importantly she had a great time doing it.

We want to thank everyone for all your support, wonderful words of encouragement, and keeping Julia in your prayers. I will let you all know how she does next week. Once again please keep her in your prayers especially on Monday and Tuesday as she goes through 2 intense days of chemo.

Thanks
Nadia

Heartbreaking News

Dear Family and Friends,

Elio and I received final pathology results today from Julia's neck and stomach biopsies and they both showed relapse of PTLD. Therefore doctors are raising the stakes with chemotherapy. She will have to do a 5 month in patient intense chemo protocol starting tomorrow. Which means the hospital will be our home for the next 5-6 months. There are 5 cycles combining multiple chemo's including injecting chemo directly into her spine. Doctors have prepared us that this protocol will be very intense and Julia will probably feel sick, and that the potential for major infections is high. She will have to be monitored very closely and could encounter some major complications. They will begin tomorrow with the first phase which they call the"reduction cycle". This is where they will introduce 4 different chemo's at low dose (including one in her spine), for one week to prepare her body for high dose chemo. After the first week she will have a PET scan and she must show 20% reduction of disease to continue to the next phase. The second phase is called the "induction stage". This includes 2 cycles of high dose chemo (multiple different chemo's). Each cycle is 21 days long, and this is the stage where she will be at the most risk since this is the stage they completely wipe out her immune system. After these 2 cycles she will be rescanned and should be disease free. If she shows no disease she will move onto the last stage which is the "consolidation phase". This consists of 2 cycles each lasting 10 days long. At this stage they will introduce the last high dose chemo drug which is a 24 hour chemo infusion for 5 days. At the end of all this we hope to be in complete remission. Since she will be so suppressed she will be taken off her anti rejection medicine while on chemo. There is a fine line between fighting this disease and making sure there is no rejection of the heart.

I know this is a lot to absorb and very confusing. I have gotten a lot of calls wanting to know what is going on so I've done my best to try and keep it as simple as possible. Obviously this is a lot to explain and I can't possibly explain it over and over to everyone.

We are all still trying to absorb the news and thinking of how we are going to mange for the next 5 months. We have a lot of planning to do in order to manage not only Julia but Anthony and Emily as well. Not to mention work, school, and everyday life. Although we have always tried to remain optimistic this last news has really hit us hard. As you can imagine there are so many emotions happening at the same time. We are sad, angry, anxious, confused, worried and most of all scared about how this will effect Julia. She will experience the full effects of chemo this time with mouth sores, infections, and total hair loss.

This has been a very difficult day and will be an even more difficult week as we begin chemo and embark on once again another battle. I am not very good at calling people and I know a lot of you just want to talk to us, so please give us a couple days to re group and think about arrangements we need to make for the next 5 months, and then feel free to call me......we need all the support we can get right now. You guys have been so loving and supportive and I want you to know that without all your support we could not get through this. I will try and keep the blog updated weekly so you can follow Julia's progress. I know I have asked a million times but please say a prayer as Julia begins a long and tough road to recovery.

P.S. There will be some princesses coming to see Julia at the hospital tomorrow so I will post some of the pictures on her blog tomorrow.

Sincerely,
Nadia

Cindrella and Belle Visit Julia and friends at Sick Kids

Hi Everyone,

On behalf of Julia and the family and friends on 8A, we would like to say a big Thank You to Marina for arranging Cinderella and Belle to come visit us at Sick Kids Hospital today. Julia and her friends had a great time with Cinderella and Belle with some dancing, story telling and colouring. Julia was very excited to see Cinderella and Belle that she waited for them in the hallway to come up the elevator, Julia was asking all morning even after she woke up from her chemo session, so when they arrived she was shy and excited to see them. We wanted to share this day with everyone with some pictures we took Enjoy!!

Mary

Quick Update

Hello Everyone,

I don't have much time or energy for a long update but I know a lot of you are waiting for news. I will begin by letting you know that clinically Julia is feeling better this week.

As some of you know Julia went into the OR last Tuesday for a lymph node biopsy (they took 3 lymph nodes in her neck out), a stomach and bowel biopsy, and a spinal tap. Unfortunately we don't have final results, but we did get preliminary results today from the lymph node they removed in her neck, and it looks like it is showing PTLD. This is however preliminary and further staining needs to be done. The gut biopsy is not reported yet. Doctors will have final results in a couple of days and come up with a plan. It looks like we will be moving to high dose chemotherapy. I don't know what chemo, how long treatment will be, or if we will need to stay in patient. It has already been 1 month we are in the hospital and the plan is to start some sort of treatment on Thursday so I suspect we will be here for awhile.

Elio and I are still trying to take in the news we got today and anxiously awaiting final pathology reports to get a clearer picture of what's going on. For now it looks like we are looking at a relapse. I will update the blog by the end of the week with final results and plan. In the meantime please pray for Julia.

Sincerely,
Nadia

Update on Julia

I wish I could report better news but unfortunately Julia is still running fevers and feeling unwell. Since this is day 5 of fevers they have started a fungal workup and put Julia on an anti-fungal medication. Julia's blood work continues to be up and down, and on Thursday she required a blood transfusion.

On a better note her heart biopsy was good and her bone marrow showed that she is producing good cells (not cancer cells), but that those cells are being destroyed somewhere and by something. The tricky part is trying to figure out where and why? Unfortunately because these tests could not rule out relapse and since she continues to have stomach issues she will under go a biopsy of her stomach and bowels. She will also have one of the lymph nodes in her neck biopsied. The surgeons spoke to us on Friday and they will try and get her to the OR on Tuesday. The combined procedures will probably be approx. 3-4 hours. Doctors are hoping that with the tissue from the lymph node and gut they will be able to declare or rule out relapse.

On another sad note we were suppose to leave on Julia's "wish trip" to Disney tomorrow morning. Obviously given what's going on we had to cancel the trip. We are very disappointed but are confident that we will be able to reschedule when Julia is better.

This has been a very difficult few weeks. With Julia feeling unwell I am extremely nervous and anxious and that makes each day feel so long. I have only gotten to see the other kids once and I am missing them like crazy. I wish I could talk to all of you but unfortunately I can barely find the energy and words to talk to doctors. I will continue to update the blog as I can and will contact all of you soon. Please continue to keep Julia in your prayers, as this is all we can ask for right now.

Sincerely,
Nadia

Quick Update

Dear family and friends,

Just wanted to let everyone know that Julia had her heart and bone marrow biopsies yesterday. She also had her PICC line put back in. Doctors felt that she really needed to have a line in for access. She was in the OR for almost 4 hours for all these procedures, and she felt really sick after the anesthetic. She spiked a 39.6 degree fever last night and was put back on antibiotics. She had a rough night last night with high heart rates and low oxygen levels......it was pretty scary. She continues to have fevers today and is quite tired. Her heart rate remains high but doctors think it's because of the fevers. Her scan on Friday did not really give us any good answers. The exact words from the docs were "it's not good but it's not bad". There were some concerning things that showed up on the scan but doctors are still not sure how to interpret the results. They are waiting for final report on the scan and the results from yesterday's tests before they re group. We do not have any results from yesterday's test but hopefully we have some answers tomorrow.

We ask that you please say a prayer for Julia during this rough ride.

Thanks
Nadia

Quick Update

Hello Everyone,

Unfortunately I write to you all from Julia's hospital room. As many of you have heard Julia was admitted on Friday from Oncology clinic. Her Oncologist came in letting us know that Julia's blood work was very worrisome. There were many markers that indicated that the PTLD may be back. Julia has been very very sick the last few days. She has tested positive for RSV, C-Diff, and a Urinary Tract Infection. She is receiving heavy duty antibiotics, and has had to start IV nutrition because she is unable to eat and barely drinking. These are 3 big infections so hopefully this is the reason she is so unwell. Doctors are trying to remain optimistic but given her history they must investigate to see if the cancer is back. She will have a PET/CT on Friday, and a heart biopsy with a bone marrow biopsy on Tuesday. They may also do a scope of her stomach and she may need to go to IGT and get her PICC line put back in. We will wait patiently for all our tests and have a departmental meeting with Oncology and Transplant next Wednesday afternoon to review results and come up with a plan.

As you can all imagine this is a complete nightmare. Especially because we are suppose to leave on Julia's "wish trip" to Disney in less than 2 weeks.

I have been getting numerous calls and I apologize for not answering or returning calls but I can not possibly talk about this with everyone, and quiet frankly I have nothing to say. I thought it would be easier to keep you all informed through the blog. I know you all have a lot of questions and your very concerned but honestly we have no answers, and we will not know anything until next week. I will try and keep everyone posted via the blog.

Thank you so much for all your support.

Nadia

Update

Hello Everyone,

I apologize for not updating everyone sooner but it has been a crazy month. Julia has had several admissions in the last month due to fever/neutropenia. Her latest admission last week had doctors a little worried about her. She is losing weight, has no appetite, very pale, and very tired. She seems to be getting fevers (with no cause), every 2-3 weeks. Julia is scheduled for a CT scan on February 26th, but her Oncologist feels like we need to move it up. She will try and get the scan done sooner. Of course Julia's blood work continues to be awful, with no explanation. Doctors are at a loss and can't explain the dropping counts. They are planning to do another Bone Marrow biopsy with her CT scan. We have increased her injections to see if this will help improve her counts. The problem is trying to figure out if her symptoms are viral or if there is something more serious wrong. I am trying to remain optimistic that this is just a virus which is taking Julia a little longer to get through.

As you can imagine I am in no mood to talk to anyone and can barely find the energy to write on the blog. I am very worried right now as I watch Julia deteriorate and wonder what is going on. I will try and keep everyone in the loop the best I can, but truthfully right now I am a mess. I thank everyone for your on going support and ask that you say a prayer for Julia.

Sincerely,
Nadia