Day +60 - Signing Out

[MDSPerth]

I know there are so many positive stories out there on the forum and I so wish with all my heart that was to have been the case for Paul.

But with deep sadness I advise that my beautiful brave Paul, loved by so many passed away on day +60, the 3rd of June.

Paul was the recipient of very very cruel GVHD of the skin (grade 4) and was readmitted to hospital on day +23. He battled so hard and his skin recovered remarkably well in a lot of areas. He even fought off the MRSA bacteria during this time. This did leave him very weak and he lost 13kgs which he could ill afford to do.

Over the weekend he was allowed home visits for three hour each afternoon. The first afternoon we had coffee at some friends for old time sake as they were about to relocate. On Sunday despite the fact that he was extremely tired I bought him home which after 5 weeks of hospitalisation he was very excited about. He could only summon up the energy to sit on the couch and then headed off to bed to have a rest before heading back to the hospital. When he got up he went to he bathroom and then collapsed on the bathroom floor.

I had to phone an ambulance. In hospital he fought like crazy, but his body was just fast shutting down.

His consultant phoned me this morning to arrange to see me. He was at that stage totally bewildered because the speed of Paul's demise is quite uncommon. All his blood tests in the morning were good including his infection markers. Blood samples have been sent to microbiology to see if there was some undetected micro organisim that could have caused this tragedy. But even if they find something it will not change this dreadful outcome.

The nurses on the BMTU loved Paul, and were always telling me what a gentleman and a model patient he was. Everyone who knew my darling Paul loved him and he will just be so sadly missed. Paul had a blog and in the last two days he has had over 2,200 hits.

He took a high risk going to transplant, trying to buy us some extra time on his 62 years - unfortunately for all of us he was not one of the lucky ones. The world will be a much sadder place for us with him gone.

Good luck to everyone of you transplant recipients out there and good luck to all you folk with MDS that just have to live with this insidious illness.

[vickij]

Sandi, I am so sorry for your loss. This is a terrible disease and we never know what the outcome will be.

[Neil Cuadra]

Sandi,

I am deeply saddened by your news and I offer my condolences. You and Paul gave your all to beat his MDS and you've been a friend to us all. Through EPO and G-CSF treatment to the transplant and then Paul's return to the hospital with GVHD, you've supported not only Paul but other forum members here with your kindness and thoughtfulness. Paul is at peace now, but this must be an incredibly difficult time for you. It's hard to believe it's less than a year since he was diagnosed. I hope you can continue to find the inner strength that has gotten you though the last year, and I hope that memories of your time and your many travels together with Paul will bring you your own lasting peace.

[Sally C]

Dear Sandi,
I wish there were words to take away your pain. This is such a shock to everyone who read your posts.
I hope that time, fond memories, and peace that only God can provide will at some point make your pain easier to bear.
God Bless,
Sally

[ssdavi71416]

Sandi

It sounds like Paul was a couragous man. Thank you for sharing his story. So sorry for your loss. God Bless You.

[SLB]

I too wish there were words to comfort you all through this time. Your messages have brought me much comfort as we rode this roller coaster together. No matter how many times I it happens, I can't believe how quickly things can change. My thoughts have been with you constantly over the last few days. Sharnie.

[sbk007]

I was saddened to hear the news. What a brave guy. My condolences.
Please take care of yourself. Give yourself time to accept this.

[Bhutt]

Sad news sorry for your loss.You & your family are in our prayers.

Blair

[Scarlett O.]

Dear Sandi,

I am so sorry to hear of Paul's death. Earlier today I attended the wake of a woman who died of cancer, and I will be attending her funeral tomorrow. I will be sure to say a prayer for you and Paul too. He was blessed to have such a wonderful supportive partner.

Scarlett

[Cheryl C]

Shocked to hear this news. My deepest sympathy to you and to your family from a fellow Aussie, Sandi. Paul was so brave and an inspiration to us all. My thoughts are with you. May God comfort you as amidst the tears you look back on the happy memories of your life with Paul.

[Snuuze]

I join with the others who have posted in offering you my sympathy. It's true that we don't know the path that MDS will take, but to have such a sudden turn must have been especially difficult. Thank you for your posts and encouragement as you have travelled through the disease with your dear Paul.
Sue

[Glenda H]

I was sorry to read about Paul. Please accept my sympathy.

[KathyM]

I too, am shocked to read this post. I am so very sorry for your loss. I have followed your postings too.

In the middle of your own shock, pain and sadness - you took the time to post here and let us know. Thank you.

I wish I had the words to make it all better..if only it were that easy.

Take care
Kathy

[gramous]

Sandy,

I'm so sorry to hear about Paul. You can be assure of my support. Take care of you.
Béné

[Lifeguard]

Sandi,

I'm so sorry for your loss. My thoughts and prayers are with you and your family.

Rachael

[Chirley]

Sandi, I'm sorry to hear about Paul. My thoughts are with you and your family. Please take care of yourself.

Chirley

[squirrellypoo]

Oh I'm so sorry to hear this. He fought so hard but sometimes it's just not enough. My thoughts are with you and your family.

[AngieA]

Sandi, I am so sorry about Paul. Know that you and your family are in my prayers.

[4bcsboys]

I'm saddened to hear of your loss. Thank you for sharing a glimpse at the courage he showed so that we can model ourselves after that virtue.
Mary