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