Update from Nadia

Julia’s fevers finally broke yesterday, and her blood cultures (which check for bacterial infection) continue to be negative. As mentioned in my last update doctors began a fungal workup yesterday to try and figure out what is going on. Although the fevers broke her counts continue to be bottomed out and she remains unwell.

This workup includes an anti fungal antibiotic (yes another one), an ultrasound of her abdomen, and a CT scan of her chest and head. She had her ultrasound this morning and her CT scan this afternoon. Shortly after the ultrasound the fellow came in our room and told us that her ultrasound showed thickening of the bowel walls, probably due to an infection. Therefore, she will have to be NPO (no food), and fed intravenously until the infection improves. She also needs to be put on yet another antibiotic to protect her bowels. We were scared but relieved that this was probably the reason for her being so unwell.

Then our oncologist (Dr. Punnett), came to see us around 5:30 tonight with some very disturbing news. I knew when she walked in the room it wasn’t good. She was teary eyed and very upset. She told us that the CT scan showed fluid in Julia’s lungs and some spots. Unfortunately they don’t know exactly what that means. We are expecting Infectious Diseases tomorrow to determine if the spots in her lungs are bacterial. Then just when we thought it couldn’t get any worse, she told us that the ultrasound showed a significant increase in the size of her lymph nodes in her stomach. She was shocked since we just had a PET/CT scan on June 19th and it was clear. She said she would never have expected to see such changes in 11 days. The real problem is figuring out if it is infection or the disease (PTLD). There is also the possibility that the spots on her lungs could be PTLD. At this point we have stopped our current chemo protocol and once again need to undergo investigation to see if there is progression of the PTLD. We will have a repeat ultrasound on Friday, another PET/CT scan next week, and possibly a biopsy of her gut. If this turns out to be PTLD we will have to start much more aggressive chemo. On top of all this we have been having difficulty maintaining Julia’s immunosuppressant levels for her heart. Therefore we will undergo a heart biopsy to be sure there is no rejection.

I can not begin to describe how difficult today has been. We feel like we have taken 10 steps back. We are in complete shock, disbelief, numb, and extremely terrified. The thought of having to spend another 3, 4, 5, or more weeks here, and being away from Anthony and Emily again is killing me. Being here day in and day out with constant IV medications being hooked up, doctors in and out, and Julia looking so sad is becoming too much for me to handle.

I apologize for communicating this information via the blog but I can not possibly discuss all the details with each of you. Despite the disappointing news we have to remain optimistic that these are all symptoms of infection, and we ask that you do the same. We also ask that you all say a prayer for Julia as she undergoes this next week of testing.

Thanks again for your ongoing support and I hope and pray that my next update will be good news.

Sincerely,

Nadia

Hello Everyone,

I wish I had better news to share but I don't. Things have gone from good to bad. Julia is still battling high fevers, and absolutely no blood counts, and doctors don't know why. Despite daily injections to boost her counts we have seen no improvement yet, and the scary thing is no one can explain it. Julia is clinically worse since Thursday, not better.

Julia had a very bad and very scary day. Her fevers reached 40.3, she started vomiting, her blood pressure dropped, and she had blood in her urine. When her blood pressure dropped doctors ordered a bolus (large amount of fluids), to be pushed in her line immediately. Instead of her blood pressure improving after the bolus it got worse. We gave her a second bolus and her blood pressure improved. Although it is not where it should be it's stable right now. Doctor's also added some heavy duty antibiotics to try and control what they think is a bacterial infection. Although the doctors believe she has a bacterial infection they have not been able to find one. If she still has fevers tomorrow they will begin a work up to see if she has a fungal infection. Julia is now on 3 heavy duty antibiotics almost around the clock and hopefully we will see some improvement tomorrow. Julia was suppose to begin her 3rd cycle of chemo on Tuesday but due to these recent events it is likely she will not be able to begin her chemo next week (which is a whole other problem).

I am sorry I have not answered or returned any calls but I can not put into words the challenges and complications we faced today. I am extremely nervous and scared right now, and in no condition emotional to talk. I hope you all understand.

I will be in touch when things improve. I hope and pray tomorrow is a better day.

Thanks,
Nadia

Julia's Update

Hi Everyone,

I am sad to report that Julia was admitted to the Hospital for Sick Children on Thursday morning with high fevers, lethargy, and absolutely no counts. Julia's blood counts are 0, which means no immunity. Her hemoglobin is also boarder line and she will probably require a blood transfusion. She has been started on heavy duty antibiotics, and daily injections to boost her counts quickly. Doctors fear that Julia has a very serious infection. When I last spoke to Nadia they were unable to get the fevers under control (even with Tylenol).

I will keep everyone posted as I know more.

I ask that you all say a prayer for Julia and her family as they are once again faced with another admission.

Thank You

Mary

Update from Nadia

June 18th, 2009

Julia finished her last chemo of cycle 2 today. There are only 4 more cycles to go. I am extremely happy to report that the doctors are very pleased with Julia clinically. She is eating well, and has even gained weight. Her blood work on Tuesday was almost perfect. I can not remember the last time it was that good (over a year). She is handling her chemo very well, despite being told that she won’t be well and her blood counts would bottom out on day 10-14 after her last chemo. For those of you who now Julia she never follows the book. She seems to do well when doctors don’t expect her to, and not well when she should. As we move through the cycles the chemo will have a harder impact on her.

Tomorrow is a big day. She is having a PET scan to determine how well the treatment is working. We need a clear scan tomorrow in order to move forward. Julia will receive a nuclear medicine 1 hour prior to the scan, she will then go under a general anesthetic and have her scan. The scan takes about 1 – 1.5 hours. After the scan she will go to recovery. The scan will show if there are any areas of over activity, which would be suspicious for cancer cells. We were told to page the doctor after the scan for immediate results, so as you can imagine I’m a little nervous. I ask that you all say a prayer for tomorrows scan.

I would like to apologize for not keeping in touch or returning phone calls sometimes, but this has been and continues to be a very challenging time for us. I have good days and bad, and quite honestly I need all my energy to focus on Julia. Juggling all the hospital days with Julia and trying to keep a somewhat normal life for Anthony and Emily has been exhausting.

It’s been a long day, and it will be an even longer day tomorrow so this is all for now. I do want to thank everyone for your support and please know that I am extremely grateful.

Sincerely,

Nadia

A wonderful gift

I received the following message from some one who saw our Facebook group Let's Help Julia:

Hi,

I saw your post on Facebook about your wee relation Julia. What a journey! 3 of my 5 kids are under the long term care at Sick Kids with a rare metabolic disorder. Anyway, the reason for my letter is to offer a gift of photography for her family. Whenever it suites. My gift is one of a celebration of life in photographs..to give hope and life no matter what part of the journey we find ourselves in. I am available to come to the hospital and have worked with Sick Kids in the past in situations like these.
If this is something you are not interested in, I fully understand but wanted to offer it anyways:)

Robynn Munnings

www.robynnmunnings.com


What resulted was truly spectacular memories for Julia and her family. What Robynn has done for this family is truly selfless, and they are extremely grateful.

THANK YOU ROBYNN!!!

Ida

*you can click on any of the pictures to enlarge them

Julia Update from Nadia

Hello Everyone,

Sorry it’s taken me so long to update you on Julia’s week, but it was a very crazy and exhausting week.

The back to back chemo days were intense, and very long. Julia was at the hospital Tuesday for clinic, blood tests, and an IV treatment. It was a 10 hour day, but she did very well. Doctors were happy with her clinically, but unfortunately, Julia is severely neutropenic (NO IMMUNITY) right now. I know a lot of people have asked about coming to see her but we will not be having visitors until her blood counts rise.

Julia received her first chemo of Cycle 2 on Thursday. It took 6 hours, and she handled it well. Friday’s chemo was an 8 hour infusion, and it made her a little sick. Doctors warned us that she would get sick that night, but I didn’t believe it because she looked so good after her chemo. But sure enough the minute we walked in the house she vomited everywhere. She had a rough night, but is much better today. Although, we were told yesterday that this chemo will have its full effect between day 10 and 14, so we will have to wait and see.

Since her hair is continuing to slowly fall out, we decided to give her a little haircut. She has given herself a new nickname of “shaggy” (she thinks it’s hilarious).

That is all for now except thank you all for your good wishes and prayers. I am so thankful to have so many good friends/family.

Nadia

Julia Update

Hi Everyone,

I just wanted to let everyone know that Julia is home from Sick Kids from her clinic, blood tests and treatment today. Julia did very well and she will be returning to Sick Kids on Thursday and Friday for chemo. We will keep you posted on how Julia is doing.

Thank you again for all your love and support.

Thank you,

Mary

A message from Nadia

Hello Everyone,

I want to thank you all for your ongoing support, prayers, and good wishes. Your messages for Julia are fantastic. I read them to her almost everyday. They really make her happy.

This has been a difficult few days for me. Julia is starting to lose her hair and it just makes things so real. It makes me realize that she may look good on the outside, but on the inside there’s a lot going on in her little body.

Julia has been playing, laughing, and causing trouble like all 3 year olds should. She has more strength and courage then anyone I know. I pray everyday that she can stay this strong through her treatment…………it will make things easier for all.

We are back at Sick Kids tomorrow for clinic, blood tests, and treatment. We will keep you posted on her progress.

I have to go but thank you all so much for your ongoing support.

Nadia

Slideshow-I love pictures!!