Julia Update

Hello Everyone,

Julia was at the hospital last Thursday for Heart Transplant clinic, Oncology clinic, and a GFR (kidney test). The good news is that Julia's heart biopsy was good. It showed mild rejection, which is expected. The team does feel that this biopsy was a little soon after chemo so although they were very happy with the results they will re biopsy her in 6 months. Her kidney test showed mild improvement from last year, and they will continue to monitor her kidneys. From a heart transplant perspective everything looks good. The chemo seems to have had no drastic effects on her heart. They were very happy with the weight she has gained. She is finally at an age appropriate weight. The nurse even joked and said "wow! It's amazing what a little chemo will do". We are scheduled to have clinic again in December along with an echo (test to check heart function).

We then went to see Dr. Punnett from Oncology. She is the most amazing, caring doctor I have ever met. We talked about the fact that Julia is still neutropenic (no immunity). She agrees that at some point we will have to take her off her injections (as she has been on it for 1 year), and see if she can hold her own, but she will not trial her off until at least 6 months post chemo. So it looks like we have to put her through these injections for another 4.5 months. One of her blood tests which were showing an abnormality in her T cells (very concerning), has returned to normal. I know most of you have no idea what I am talking about but this is fantastic news. Dr. Punnett believes these cells were reacting to the PTLD. She stressed how important November 6th's CT scan is. She told us that this is "the big day". This will give doctors an idea of how well the chemo worked? If she is in complete remission? or will we have to continue with more chemo? All we can do right now is wait patiently and hope and pray for a good scan. We will meet with Dr. Punnett after recovery for the results of the scan. If the scan is good we will make plans for taking out her PICC line, and go from weekly blood work and clinic to hopefully monthly blood work and clinic. The protocol for PTLD is a 1 year follow up with Oncology until we will be considered free and clear.

Julia is feeling good, and having an amazing time at school. She is so excited to be able to do everything Anthony gets to do. She has become better and better with the hospital visits and her home care nurse who comes in everyday. She even has started giving people lessons on her PICC line, how it works and what it's for. It's actually quite funny and also so sad at the same time. She has made so many friends at the hospital, and all the nurses make her feel so special.

Once again Elio and I thank you all for your thoughts and prayers, and ask that you all say a prayer for her scan on November 6th. We have been so stressed out and worried about this scan. It all comes down to this scan. The last 6 months of hell all comes down to this one day. It could finally be the end of a horrible journey or the beginning of complete hell. I will let you all know once we receive the results from the scan.

thanks
Nadia

Update on Julia

Dear Friends and Family,

I apologize for not updating everyone sooner, but things have been crazy.

Julia had her heart biopsy and Oncology clinic yesterday and she has recovered fairly well. She has lost her voice a bit from having the breathing tube down her throat, and she is a little dizzy and unbalanced today but overall she is feeling quite well. It's amazing that no matter how many biopsies Julia has had I never get used to it. My heart races, my head fills with awful thoughts, and I am in complete panic. Carrying her into the OR crying and begging me to make them stop is torture. Julia has come to understand exactly what is going on. She knows when I gear up in the white gowns, and surgical slippers and hat we are going to the OR. As I carried her into the OR yesterday, a cold room which is filled with machines, doctors and nurses I thought about how many times we've had to put her through this, and that she should be at school playing with all her friends, not here. She wrapped her hands around my neck for dear life, and screamed "no mama, no mama, make them stop". As they injected the "sleepy medicine", into her PICC line the screaming got less and less, until she passed out and became complete dead weight in my arms. Having to lie her on the operating table and leave her there with machines beeping away is something I will never get used to. We waited patiently for an hour and half, (which felt more like 10 hours), and then we were finally called into the recovery room to see her. She was still completely knocked out, and I found myself staring at her monitors and jumping off my seat every time they rang off. After a few hours in recovery we were discharged.

After biopsy we met with Julia's oncologist, Dr. Punnett. Julia's blood work continues to be up and down, but thankfully she has manged to stay well. I think that this will be the case for Julia. Her blood work will continue to make no sense some weeks and fine others, so we will have to go by how Julia is feeling. Dr. Punnett seems to be a little concerned with some subtle changes we have seen in Julia, so she has changed us back to weekly visits. She does not want to speculate on anything until we have her CT scan on November 6th. I tried to discuss taking out the PICC line, but Dr. Punnett felt like we should wait for the CT results and then make a plan. She has decided that she will scan Julia every 3 months as appose to every 6 months. I think she feels that Julia is very unpredictable and complicated so she would prefer to keep a closer than normal eye on her. I really thought that once chemo was over we would be out of the Oncology scene, (and I desperately need this because I don't know how many more kids I can see pass away), but that doesn't seem to be the case. Some days it feels like we will never get a normal life back. I am very grateful that Julia has done well, and have to remind myself everyday that the day will come where we are free and clear of Oncology, it's just taking a little longer than expected.

Julia was granted a "Make a Wish" from the Children's Wish Foundation when she had her heart transplant, so we are really hoping that we will be able to grant her that wish very soon. Her wish is to go to Disney and meet Cinderella. I spoke briefly to Dr. Punnett about this yesterday and she didn't see a problem trying to plan this wish for her in January or February. So we along with the doctors and nurses will work towards getting Julia her wish. I will however have to learn how to give Julia her injections. But we'll deal with that when the time comes.

Julia is loving school and she is in love with her teacher Mrs. Lowrie. She has adjusted better than expected and she is so happy. Julia brought home a paper pumpkin and had to write what she was thankful for on it. I asked her what she was thankful for and she said "school". I tried to explain to her what being thankful meant, I told her Julia what do you thank God for everyday, your family? your friends? etc. she said "no mom, school". She said "Mommy I am so thankful I get to go to school". It was the cutest and most heartbreaking thing at the same time. I thought about it and realized that she is thankful for the simplest things in life. She is the greatest, bravest little girl I know. I am so proud of her, and she teaches us something new everyday. She teaches us that life is a gift, and should not be taken for granted. That we should not overlook the little things in life, and that we should be grateful for everything we have, because there is always someone out there that has is worse. It's amazing that this 4 year old little girl can really teach us all a life lesson.

I want to thank everyone for your ongoing support. Elio and I could not get through this without all your love and support. I really need to thank my parents who without them we really would have gone crazy. They have had to be parents all over again to Anthony and Emily, and totally re arrange their lives around Julia and her appointments. I am so thankful to have such amazing parents.

I would like to ask that you all say a prayer for Julia that her biopsy results are good and that her CT scan on November 6th shows complete remission.

Thanks

Nadia