General Chat

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

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

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

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.

n

thoughts for Aria

xxx

XXX for this little girl and her family

Nudge

Positive thoughts and prayers for this family

Good night prayers for this little girl and her family

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.

Healing thoughts and prayers for Aria, she is too young to have to go through so much.

Dear Annie from NZ

Hello

Hope you are okay.

Unbelievable that the little one should have to be going through this.

Sending caring and wam thoughts to her and her parents.

Take very gentle care
Very sincere wishes
xx

Positive and healing thoughts for this brave little girl and her family. It's difficult to imagine what she's already been through and now having to face this as well.

Cath xx

Special prayers and positive thoughts not only for this young child but also for her entire family. Thanks for the update. I am also offering prayers and positive thoughts for all the people who are working hard to help this little one.

08.40hrs Spain

Thinking of Aria today with a special consideration as my great niece was allowed home yesterday. Not the same illness as this little child but they are both suffering.
I cannot imagine the pain and sorrow the family are experiencing so all I can do is send positive thoughts and continue to talk to whom my children call"Him upstairs".

Annie, thank you for giving us such a good insight to what is happening.


11.08 hrs. Spain

Some good news. She doesn't have the cancer that they suspected. It was a very bad case of glandular fever.




Aria MacDonald has beaten the odds. Last week, doctors told the four-year-old Auckland preschooler's parents that she almost certainly had post-transplant cancer.

Aria 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.

Born with a rare condition that prevented her from digesting food, she would have died of liver failure without a successful transplant.

After she was admitted to hospital last week with a mystery illness, Omaha doctors said test results indicated there was an 85 per cent chance it was post-transplant cancer – a rare but serious complication caused by the virus responsible for glandular fever.

However, initial biopsy results that came back on Saturday were enough to confirm Aria did not have cancer. Instead, it was a particularly bad case of glandular fever, her mother Anita wrote on the family's blog.

The week had been "a huge emotional roller-coaster", Mrs MacDonald wrote.

Aria was still at risk of other infections because of the immune-suppressing drugs she needed to take to prevent her body rejecting the transplanted organs.

"But despite needing [oxygen] at night and being a bit more sleepy she is pretty well. We continue to pray this is the extent of her illness, the new drug starts to work and she is spared from infection."

The family hope to return to New Zealand later this year, after a Make-A-Wish trip to Disney World for Aria's fifth birthday.

I hope this little girl continues to do well, great news that it wasn't post transplant cancer. Her family must be incredibly relieved and have been through so much heartbreak already. I wish them every happiness.

What wonderful news to read and a great way of starting my day. However I shall continue to keep Aria and all her family in my daily quietbtime and prayers.

Thank you Annie from NZ for keepingbus all updated

09.35 hrs Spain

A special prayer and message for Aria and her family, my she remain safe and well, I am sure that her family must be so delighted.
Do let us know when Aria is going to Disney world, she must be so excited.
Spain 12.40hrs

Another update from her website. It is dated 13 April 2011:

Yesterday we did the blood test for Aria’s EBV/Mono/G Fever. Her count got as high as 9 million at last count and today it is………

870,000!!!!!

Wow!!!

This is a huge drop and very unexpected. The Infectious Disease team told us we would optimistic if it dropped a bit but in reality we should be happy if at least it didn’t get higher. So the result today is very very good. Considering she has only had two doses of the medicine.

Also, finally, Aria’s outputs are better! She has been able to go back up on feeds 80 tonight and goal is 100.

What is less than miraculous is that Aria has been admitted since Sunday. We took her in for high fevers and turns out she has a pneumonia. Not a terrible one but not a great one. She has improved with a change to IV ABX but has plateaued the past couple of days and still spiking temps so they switched them today.

We have had friends over from NZ and to stay with us for a couple of days. Sadly we were in hospital but Hamish and I got to spend time with them and they visited Aria in hospital. We had a great time with them. Asher really took to Peter and Margaret (and they to him) in a very short space of time and was quite heartbroken this morning when they left. So Hamish is taking him to the movies today to distract him and cheer him up.

Today we are really praying that Aria will not spike a fever in the morning tomorrow and we can get home! Having only one day at home allowed us to recharge our batteries but we need more.




Thinking of her and the family. Hope they will continue with the positive steps forward.

Annie

xx

Unfortunately some bad news. The poor little thing does have cancer. How much more does she have to go through?

The following is an excerpt taken from Aria's website, written by her mum and is dated 15/04/2011:


We are shocked.

Aria does indeed have PTLD, post transplant cancer.

We knew that her EBV count had come down but her bone marrow and infection fighting cells had not bounced back. They are pretty much sitting at zero. And have been for two week or more.

I guess alarm bells must of started ringing today. They decided that they would re biopsy her on Monday if things didn’t improve over the weekend.

However when the surgeon came back a couple of hours after rounds and my alarm bells started to ring. Getting a visit ‘after hours’ from the surgeon is always bad news.

He is the chief transplant surgeon and very experienced. He sat down the the chief pathologist and together had a meeting and read the slides. It isn’t obvious PTLD but it does look suspicious, there are big black cells which look like cancer cells in Aria’s bone marrow. That is a basic explanation, I was so shocked I don’t think I took it in very well.

Aria is in the PICU and had her first round of chemo lite today. She did pretty well. They started her on steroids. Everything will go in a cycle, once a week. How many cycles? Who knows, will depend on how she responses to it.

So we are feeling shell shocked and sad. We thought PTLD was off the table. We rejoiced that it was.

Please pray for us. Asher is also pretty sick with a double ear infection, poor boy.

We feel really downcast. Life is tough right now.






Thoughts and prayers for the family. Hope that they can get through this.

Annie

xxxxxx