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

Another Admission

Hi Everyone,

I regret to inform you that Julia was admitted to hospital Monday with fever neutropenia(low counts), enlarged spleen and lymph nodes and lethargy. In rounds yesterday I was basically told that they suspect the disease could be back and we are proceeding with a work up. Later that day our oncologist came to see us and put the breaks on. She has taken us off the experimental drug and moved the Bone Marrow aspirate and PET scan to end of next week. She is not convinced it's disease. Since the experimental drug suppresses the bone marrow she wants her off of it for at least 1 week before doing the bone marrow aspirate. We will be going ahead with an ultrasound today. Julia's x-ray and echo showed some suspicious findings that there is a pulmonary inflammation going on. Last night it was confirmed that Julia has tested positive for Para Flu. This would explain the fevers, and findings on x-ray and echo, but not the other findings. This can be extremely dangerous in immunocompromised kids and can lead to a serious pneumonia. For now she is being well supported and in the right place. Unfortunately this means she will not get out of here for Anthony's communion on Saturday. We have discussed with doctors that IF she's clinically well they will get her out on a pass for a few hours so she can attend the communion. This could not have happened at a worse time but not surprised given our luck.

Yesterday was an extremely emotional day and not in the mood to go into much more detail right now. I will keep you all posted when I know more (which probably won't be till end of next week). Please keep Julia in your prayers.

thanks
nadia

Happy Transplant Anniversary

Hi Everyone,

It's hard to believe that 5 years ago today Julia underwent heart transplant. May 5th, 2006 @ 6:00am - this was the day our lives changed forever. It's been a long and challenging 5 years but when I look at Julia today I can't believe that 5 years ago doctors didn't think she would survive. And now after all the challenges she is a beautiful strong 5 year old girl, feistier than ever.

Julia had her CT last week and the results were unchanged from the previous scan. Good news, could have been better. Julia continues to have some unexplained enlarged lymph nodes in her chest but they are not growing. Given all the bumps recently this was a good scan given the alternative. We will continue to monitor with another CT in 3 months unless clinically needed sooner.

She was at the hospital on Friday and her counts continue to be very low. Doctors think it's because of the experimental drug she is on. It came down to controlling the EBV or saving her counts and avoiding neutropenia and blood transfusions. Her doctor decided to reduce the drug to once a day instead of twice hoping to see improvements in her counts. She did not have the results of her EBV numbers when making her decision but assumed her EBV would be down. On Monday we repeated her counts and they are slowly improving. Yesterday I received an email from Julia's oncologist that her EBV numbers from last week are up. The decision was made to stay on the experimental drug once daily and repeat the EBV next week. As you can imagine it is a fine line between controlling the EBV and keeping her counts up to avoid serious infection. Always a battle nothing ever comes easy with this kid!

Overall she is feeling better and is back at school which she is so happy about. Anthony's communion is next week and fingers crossed that Julia will remain healthy for it. We have confirmed Julia's wish for September 29th. We will be doing a 4 night Disney cruise and 3 nights on land. The kids are so excited they can hardly wait. It's going to be a long 5 months waiting.

Thanks again for all your support and I will keep you posted on Julia and also post some pictures from Anthony's communion. This will be the first family function that we all attend in a very long time.

Sending everyone a very Happy Mother's Day. We are so glad to be home for this day considering 3 of the last 5 Mother's Day's were spent at Sick Kids.

Nadia

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