General Chat

The family, and especially Aria remain in my prayers and positive thoughts.

08.10 hrs Spain

So Sorry to hear this terrible news. What can I or anyone say only to wish little Aria and her family better times.I feel so much for them all.

Sending love and positive thoughts to you all. You will be shocked. I pray you get over this and try to stay as possitive as you can for Aria. She deserves to get well after all she has been through and live a healthy life.

xxx

how awful to get this news. we must send them positive thoughts and hugs to help them through this terrible chapter in this little girls life.

thinking of the whole family
florencexx

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

Hope Aria is making progress and home soon. :))

Sending love to Aria and her family. Hope her fever has gone and she is soon well enough to go home.

sylvia xxx

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

Good to read this little girl is on the mend.
I've been away for a few days, and have just read this.
Thanks for the updates.

well, what a result, aria and her family must be so relieved. sending you all hugs and positve thoughts for a continuous good recovery.
florencexx

Sort of puts life into perspective - healing thoughts x

Well a glimmer of hope, I do hope Aria can fight back now and her body will accept the donated organs without problem. She and her family have been through so much already.

Lizx

Sending love to Aria and her family.

Praying you get well soon Aria

xxxx

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."

really hope they make a diagnosis soon, so they can get on with treating aria. the worst is the waiting, i know.

lets hope by tomorrow the picture will be clearer and they can help her.

love and thoughts to her and her family
florencexx

Must be awful for the family to have such confusion over the situation, hope the docs can be sure very soon and know the right way to treat this little girl.

Lizx

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.

n

thoughts for Aria

xxxx

So sorry to read of this poor wee soul. She has been through so much, and pray that she will come through this.

Positive thoughts to her and all the family.

xxxxxx

When I read it this morning I felt so very sad for her. Such a happy smiley little girl in the picture on the article. I thought how cruel life can be to this little girl who has already struggled so much just to live.

I will be crossing everything that the chemo works. I will be thinking of her and praying for her and the family to find the strength to get through this terrible time.

xxxxx

How awful for this child and her family. She has had so much in her young life. I pray the chemo. works and she can go on to live a long healthy life .
She has been through so much in her young life.
Love to her and her family
xx