General Chat

The following I have copied from her website aria.org.nz and is an update posted on 05/04/2011 by her mum:




Today was suppose to be the day for answers but instead we just have more questions.

We were told 24 hours for information about the PTLD but now it is ‘later in the week’. Being that it is Tuesday here we will be waiting a few more days yet.

But suddenly there is a new diagnosis on the table. Graft V Host again. They did a blood test and simply put Aria has 80% donor cells and 20% her own. There is a fancy word, sounds like karma, can’t remember. So the donor cells have taken over her body and are fighting it. Kinda the opposite of rejection where Aria’s body rejects the organ. This is were the new organs become the boss and take over. This might explain her ongoing skin issues and her bone marrow issues too.

The treatments for PTLD and GvH are quite the opposite. So we can’t do anything until we know for sure whether it is PTLD or not. I am told it can’t be both, fairly impossible.

Anyway, it is pretty tough going. And having to keep waiting is really hard.

Aria is doing pretty well in herself. She is back on O2 during the day but hopefully just a result of being intubated in the OR.



Update from 06/04/2011:


Today is another waiting day. No news or diagnosis.

Good night prayers for this little girl and her family

Nudge

Positive thoughts and prayers for this family

XXX for this little girl and her family

n

thoughts for Aria

xxx

Bless her Heart, Her whole life full of illness, I wish her all the luck in the world and she will be in my prayers.

I had to read this twice just to make sure that I had read it correctly. What a little fighter this little girl must be, and how strong her parents sound.
Epstein-Barr virus is best known as you say for Glandular fever but does from time to time cause other more complex conditions.

I can to a certain degree empathise with the family and friends of this little child as I have a great niece who is also very poorly and there is a three about my niece, who is having surgery today or twomorrow.

I shall add Aria to my daily positive thoughts and prayers, and now will continue looking in on this thread.

Hugs to the family (((((((((())))))))

07.20hrs Spain

You know, there are some people who just never get good luck, and this poor little girl seems to be one of them. I hope things aren't as bad as feared and that she will have the strength to fight back and be able to go back to NZ with her family soon.

Lizxx

The poor little thing only 4 years old has been though so much in her short life to now be dealt another blow to her health.

The following story taken from stuff.co.nz:


A multi-organ transplant saved Aria MacDonald's life, but the four-year-old now faces a cruel twist – a probable cancer diagnosis.

Aria, from Auckland, received a liver, kidney, pancreas and small bowel transplant at Nebraska Medical Center in Omaha last May – her second transplant after an earlier one failed.

She was born with a rare condition that stopped her from digesting food, and would have died of liver failure without a successful transplant.

Aria and her family have stayed in Omaha while she recovers from the transplant.

But last Friday, doctors gave her parents bad news – test results showed there was an 85 per cent chance Aria had developed post-transplant cancer.

Her mother, Anita MacDonald, said the diagnosis was not yet confirmed but it was a tough turn of events.

"Who has two transplants and then gets cancer?"

Aria's medical team was also upset, she said. "They've fought so hard for her."

Although it was a serious complication, the cancer would not necessarily be life-threatening, Mrs MacDonald said.

"The survival rates are about 85 per cent. It's not fully terrible but it's not great either."

The results of biopsies taken yesterday were due back in the next day or so. In the meantime, Aria has begun a course of chemotherapy in case the diagnosis was confirmed.

Mrs MacDonald said she and husband Hamish were "trying to keep rational and calm".

They hoped a cancer diagnosis would not prevent the family from returning to New Zealand later this year, as planned. "We're really keen to get home."

Risks of Weak Immune System

Post-transplant cancer is usually caused when a transplant patient contracts Epstein-Barr virus, which causes glandular fever.

Epstein-Barr causes the body's B-cells to multiply rapidly. In a healthy person, this is kept under control by T-cells.

However, people who have recently had transplants have suppressed immune systems, to stop their bodies rejecting the new organs, and this stops the T-cells from doing their job.

As the B-cells continue to multiply, some will mutate, leading to lymphomas and other cancers.



She needs all of our positive thoughts and prayers.

Annie

xxxxxxxxx