Home Sweet Home

Hi Everyone,

Just wanted to let everyone know that Julia is now home. She tested positive for Influenza A and it really wiped her out. Many people were surprised that I was thrilled when the swab was positive for Influenza but in the Oncology world every positive culture you get or every source you find for illness stops all the thoughts of disease relapse. Although she has not recovered totally she is feeling much better. She is still more tired than usual and has lost over 2kg in the last couple weeks. She was at the hospital today for clinic and bloodwork and the results were better. She is slowly having count recovery and all her electrolytes are back in normal range.
While Julia was admitted she was taken off the experimental drug and unfortunately her EBV numbers sky rocketed. She is now back on the drug and hopefully we will see the numbers come down. She is scheduled for her CT scan on April 27th and we are all crossing our fingers for good results. For now we continue to monitor the EBV very closely.

I want to thank everyone for your support while we were in hospital and calming me down as I was in pure panic mode. I will keep you all posted on the results of her scan.

Thanks
Nadia

Spoke to soon..............

Hours after updating you all on Sunday Julia was admitted to Sick Kids for high fevers and letheragy. Her bloodwork showed that she is once again neutropenic. Her counts have taken a dive. She was cultured for infection and put on antibiotics until we know what is going on. She is feeling really sick and can't break the fevers. I was really freaking out yesterday............deja vu. Looking at her laying in her hospital bed unresponsive, it was to much to bare.

Please keep her in your prayers and I will keep you all posted.

Thanks
Nadia

Update

Hi Everyone,

Just wanted to let everyone know how Julia's month has been. She started the month feeling unwell and doctors weren't quite sure what was going on. Like always we went through all the standard tests and found out that Julia had strep throat. Great news!!! A lot of people found it strange that I was happy about this but you have to understand that when Julia is unwell with fevers and we can not find a source it has doctors pointing to the cancer. So the fact that we had a source (strep throat), was a relief for us. She was treated with antibiotics and was feeling much better. Unfortunately she's passed it to Emily and in the last few days Julia is again not feeling that well. Which could mean she has caught it back again from Emily. We will have to ride it out and see what happens over the next few days.

Julia was at Oncology clinic on Friday and the doctor was happy with everything. Her counts are starting to drop probably related to the new drug but she is not neutropenic which is great. We will have to watch counts closely while she is on this new drug. Her last EBV counts had dropped slightly since being on the new drug and we repeated them on Friday. Hopefully we will see another decline. She is scheduled for a CT scan on April 27th which has me a little nervous. For now we are continuing to monitor things closely with bloodwork and clinic appointments.

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

Thanks again for all your support.

Nadia

Quick Update

Hi Everyone,

Julia had her kidney tests done and they were significantly reduced from last year. Which means her kidneys are really taking a hit from the meds. Given these results we decided to hold off on the experimental drug and wait to see if her EBV numbers continue to increase. Julia was scheduled for her heart biopsy last Tuesday and on Monday she developed fevers and was feeling unwell. We did not think they would go ahead with her biopsy but proceeded to the hospital Tuesday morning. After many discussion back and forth with doctors it was determined that the importance of the biopsy outweighed the risks. Given that we had reduced the steroid 5 weeks ago this biopsy was a must. Therefore they took her into the OR with the fevers. We were extremely nervous but like always Julia did very well. Because it was unclear why she was having fevers doctors started her on a high dose of Penicillin to cover her just in case something was growing. On Wednesday I got the call that biopsy results were good, there was very minimal rejection (which is expected). Boy were we all relieved. We were at the hospital Thursday for clinic and since Julia has been a little off and experiencing diarrhea, stool samples were collected. On Friday afternoon I got a call that her samples tested positive for Torovirus (a stomach bug). If that wasn't enough Friday night I got an email from Oncology that Julia's EBV numbers have tripled in the last 2 weeks (not good). We will repeat the numbers this week and are starting the experimental drug immediately.

It's been a stressful month but I have to remain optimistic that Julia will continue to fight and be strong and that all will work out fine or I will really lose my mind.....which is already happening....haha.

Thanks again for all your support and concern and I will keep you all posted on how she's doing.

Nadia

Update

Hi Everyone,

I apologize for the delay in updating you all but it's been a crazy few weeks. Julia's surgery went very well according to doctors. It's amazing that after all I've seen and all the procedures Julia's been through this one hit me hard. I brought Julia into the OR (I don't normally - that's Elio's job) because she insisted I bring her. I had a major meltdown in the OR. I have never in 5 years cried so much that the whole OR was worried about me. They kept asking me "mom are you ok? get her some water?". I felt like saying who cares about me just take good care of my daughter. I held Julia tight as we walked in the OR and she begged me over and over "no mommy don't let them do this to me, please mommy, please mommy". Broke my heart, I could not compose myself. She gave them quite the fight, it took three of them and me to hold her down as they tried to mask her and get her to sleep, and even after getting the mask on she fought with everything she had. She held my shirt so tight and they couldn't believe she wasn't knocked out yet from the meds......that's my fighter. The wait..it was the longest 3 hours ever as I sat in the waiting room unable to control my emotions. Everyone around me must of thought this was my first time there. Finally after about 3.5 hours the doctor came out and pulled us into a private room. The surgeon said that Julia did very well and he was extremely happy with the way the procedure went. Unfortunately due to the size of the chin bone he had to remove he had to put her in a full leg cast (from butt to toes). Needless to say when Julia woke up and saw the cast she freaked. She was in a lot of pain and they did a good job keeping her druged up on morphine. The pain lasted about a week and then like the fighter she is, she totally recovered. She started moving around, determined to walk even with this huge cast. She was at the hospital on Tuesday and they switched her full leg cast to a half cast (for another 4weeks),and she was able to go back to school which made her so happy.

On a sad note Julia's EBV numbers (potential markers that the cancer is or could come back), are on the rise. We met with doctors Tuesday and given that Julia relapsed already once when her EBV titres started going up we have decided to start an experimental drug to try and control these numbers from climbing. The drug is considered "cytotoxic" - like chemo), and of course has potential harmful side effects. We were suppose to start immediately but Julia's blood work on Tuesday was really bad. We repeated the blood work on Thursday and although a little better still not good. Given these results she has been booked for a GFR (a kidney test), on Tuesday to see what's going on and because this new med is extremely hard on the kidneys we have postponed starting until doctors see the results of the GFR. Given that her EBV is on the rise we have started weaning the steroid to hopefully help with the rising titres. We have cut the dose in half and Julia will have a heart biopsy on Feb 22 to make sure there is no rejection.

I'm not really sure why but the last few weeks have been extremely hard. I'm physically and emotionally tired, worried, frustrated, and most of all so sick of being at the hospital. It feels like after 5 years of fighting I am quickly losing strength. I am emotional and can't stop thinking about what we've gone through and even more scary what will happen next? Will we ever be free of the hospital or constant worry? We continue to be at the hospital 1-2 times a week and quite honestly it's really getting to me. Julia's doctors asked me on Thursday if I was ok, my response "did I tell you how much I hate it here". After I said it I couldn't believe it. There are many families fighting tougher battles right now and losing so I try to remain grateful for where were at.

This upcoming week is one of many tests and results on Julia's latest EBV numbers. I am a nervous wreck waiting for the numbers. I will let you know how this week's tests go.

I want to thank you all for your continued support and let you all know that without your support, encouraging words, and prayers we really couldn't have gotten through this. I do want to apologize for my distance. I realize that I have not been very good at responded to messages and I apologize but these days I don't have much to say and feeling a little down. Just need some time to re group. I'll be in touch soon.

Thanks
Nadia

Update

Dear Family and Friends,

I hope you all had a wonderful Christmas and New Year.

We all had a relaxing and uneventful holiday. Julia has remained well and she enjoyed her 3 week break from the hospital. She was at the hospital yesterday for clinic and bloodwork, and everything was great. After more than 3 weeks without clinic or bloodwork I was a little nervous to get the results, but all her bloodwork was perfect. Looks like 2011 has started on a good note. The only stressful news is that Julia will be having her knee surgery on Tuesday.....YES this Tuesday. I just found out yesterday and was completely shocked it is so soon. We met with doctors yesterday to discuss the surgery and more importantly pain management. Apparently the surgery and recovery is extremely painful. She will require major pain relief including morphine and a IV line in her leg to deliver constant narcotics to the surgery sight. She will be admitted Tuesday morning and the surgery will be at 8:00am. She will be in the OR for a minimum of 3 hours, than go to recovery and then be transferred to the ward. She is required to stay in hospital for awhile. The total recovery period is 6 weeks. I am extremely scared, nervous and worried. After the million procedures she's had I don't know why this one has me so scared. I think the length of time in the OR combined with the pain she will experience is putting me over the edge. I feel so bad for her, that she has to go through this. Like she hasn't had to deal with enough. Now that she feels well we are faced with another set back. She has no idea what is going to happen on Tuesday and Elio and I are struggling trying to decide how to deal with this. Do we prepare her or not? For those of you who know Julia telling her may make things worse, but not telling her makes me feel horrible. How do you explain to a 5 year old that she is about to experience one of the most painful surgeries and will not be mobile after it? Just writing about this is making me sick.

Once again I ask you all to say a prayer for Julia. We hope and pray for a smooth surgery and a speedy recovery. I will keep you all updated on how she is doing.

Thanks for your continued support.
Nadia