Sunday, September 28, 2008

"Hello, Hello, its good to be back..."

Day +53

Sorry for quoting the notorius GG but the lyric seems appropriate. I've been feeling much better in the last few days. Things seem to be settling down gradually. Still not allowed to eat, the gut needs a good rest. I don't have to rush to the bathroom so much which is a relief. The drugs seem to be doing their job though it may take a couple of weeks to really settle everything down and back to normal.

I seem to have a lot more energy at the moment. I'm using an exercise bike every day so that helps. The steroids waste muscle so I need to do something active every day.

Thanks to everyone for your messages of support and sorry I haven't been able to respond to everyone.

Well done the Hawks and Alastair. I listened to the match online (with intermittent vision from the webcam at the apartment). What a great game, I wish we could have been there...hopefully next year.

Current Reading: 'The Honourable Schoolboy' by John Le Carre
Current Listening: 'Bang' by World Party

Friday, September 26, 2008

Hawthorn - Premiers 2008!

Day + 51

Well, they did it! "HAWTHORN has won its first premiership in 19 years, overrunning Geelong to win by 26 points in front of 100,012 fans at the MCG." Well done to all at the club and especially to Alastair. We are so very pleased for you all.

As you can see, Graham is feeling SO much better today and managed 15 minutes on the exercise bike under Physio supervision to try and regain some strength as the high dose steroids he has been on have been wasting his muscles. It is amazing the change that has happened in the last couple of days and it is obvious that the trial drugs are definitely having a positive impact on his Graft vs Host Disease.

I am off to bed now after staying up for the game (Jack made it to 3 quarter time before he had to turn in at 11pm!), so more later. Feeling very happy right now.

Sam xx

Thursday, September 25, 2008

Go Hawks!

Day +50

Graham is feeling much more like himself today, which is a great sign.

He is asking for books and magazines, reading The Guardian online, watching movies and listening to music for the first time since the transplant. And this is all in the last 24 hours. This was one of the most worrying things for me after the transplant; seeing him lose interest in the activities that mattered to him.

Today also marks the half-way point in his 100 days post transplant. Everything else is looking good and if we can just get him over this last hurdle, I know we can all return to Australia together in November.

The other exciting news is that I have managed to get access to view the AFL Final tomorrow through the Setanta Sports' Channel and am going to set up the webcam so Graham can watch it in his hospital bed! We are very excited and wish the Hawks all the best. We will be cheering madly for you to win!

For those readers not from Australia, Alastair Clarkson, pictured above with the players, is the Hawthorn Football Club Coach and stood up for us as soon as he found out how much money we needed to raise to get here for Graham's treatment.

I don't want to get too soppy but he really is a fantastic person and without his support, we would not be here. He has also turned around the Hawks' performance in a short amount of time and it would be a wonderful thing if they can upset the Cats tomorrow.

Go Hawks!

Sam xx

Wednesday, September 24, 2008

Before and After

Day +49

Graham's diarrhea slightly worsened today but the Docs think the volume will go up and down until it fully settles down. The important thing is that the timing is spaced out from about every 10 minutes or so to an hour or more. He gets another dose of Mesenchymal Stem Cells tomorrow and some more Infliximab on Friday so we think he will continue to improve.

I thought I would include some before and after pics to show what a toll this whole procedure has taken on Graham. The first picture is taken on July 6th, Day 0 and the second one is taken on the Day +46, 21st September (which was my birthday). He couldn't even manage a smile for me and I think that says it all. He just feels so worn out by the whole thing but we are confident he is on the mend again and that he will be out of hospital soon.

Thanks for your support and for the offers of air miles. We really appreciate it. Mum is arriving on Monday as we received enough for the one-way leg and will soon have enough to book the return leg.

Sam xx

Tuesday, September 23, 2008

Turning the corner?

Day +48

Happy days are here again!

Graham is a bit better today. His 24 hour diarrhea volume (yes, they measure it) has reduced from 2,200 mls to 970mls. They don't know what did the trick but I think it is the combination of the Infliximab, the Mesenchymal Stem Cells and the heartfelt messages of support that we have received from so many people all around the world.

He had a full body CT and MRI today so it would be great to see that the bowel wall inflammation has reduced (the scan on Friday showed that the lining of his gut from his stomach to his bottom from inflamed) when we get the report tomorrow.

I have also received messages from people wanting to donate their Air Miles to get my Mum over and we think it is going to be possible to get her here next week by using Qantas Frequent Flyer Points to San Francisco and United Air Miles to Seattle.

We need another 34,000 Qantas FF's for a return flight to SFO and another 3,000 United AM's for the SFO - SEA return leg.

If you want to donate Qantas FF's, you can do so by logging into your account and donating a minimum of 5,000 (their rules) to my account and similarly, you can do the same with United. With Qantas, you will have to specify that I am a family member and a Qantas employee whom I spoke with this afternoon said that you could put me down as a Sister-in-Law would as they never check!

Please get in touch for my account details.

I will update tomorrow and hopefully I will have some good news. We are marking off the days till we come home on a big wall calender and Jack said "only 52 days to go" to me today!

Sam xx

Monday, September 22, 2008

Mesenchymal Stem Cells

Day +47

Graham had an infusion of Mesenchyaml Stem Cells (MSC's) today as part of a Phase III Clinical Trial for Steroid Refractory Acute Graft vs. Host Disease. It is a Double Blind Study which means neither the patient nor the Doctors know whether the MSC's or a Placebo are given. We were a bit concerned about this as the MSC's have shown very good results and we really didn't want the placebo!

Well, it turns out that the MSC's have a very distinctive smell and Graham's room was stunk out during the infusion! So much for the Double Blind Study - LOL!

He is much the same today but we have a very positive feeling that he will beat this thing. All the wonderful messages of support that have flooded in today have been very much appreciated and have given us both a boost.

I do have another favour to ask. If anyone has any United Airline Air Miles that they would like to donate to me so I can get my Mum back to Seattle to help out with the kids while Graham remains so unwell, I would be very grateful. Please drop me an email if you can help. A friend of ours here in Seattle (and Australian by marriage), Chris Tarling, has offered me 12,000 and we need 80,000 for a return flight.

Thanks again for your continuing support.


Sunday, September 21, 2008

Another mountain to climb...

Day +46

Graham is no better today and in fact the diarrhea is worse.

We are very grateful that we are here in Seattle as they have many more options available to us because of their research centre.

If the Refractory Acute GVHD can't be controlled, it will be fatal. He no longer has any sign of Leukaemia but unbelievably he has another battle to fight.

It is very unexpected that he would get Grade IV (the worst) GVHD let alone be resistant to the steroids. We are hopeful that this new treatment will help him turn the corner but we may not know for another couple of weeks.

He is not up to responding to your messages but he is checking his email so if you want to leave a message of support here or send him an email, I know he would be very grateful.

Much love and thanks.

Sam xx

Saturday, September 20, 2008

No Change....

Day +45

Graham had his Infliximab last night and so far there has been no change in his condition.

Thanks to Ruth and Lisa for helping out with the kids and providing moral support.

Will update tomorrow.

Friday, September 19, 2008

Refractory Acute Graft vs Host Disease

Day + 44

Sam again.

Graham's nausea and vomitting has stopped but he has developed very bad diarrhea which is worsened today. He is now considered to have Refractory Acute Graft Vs Host Disease of the Gut, ie; it is not responding to the steriods.

This is a very bad position to be in so they are starting him on a clinical trial as there is no standard form of treatment for this condition.

Although he now has no leukaemia present, this is a very serious situation and if he is going to respond, we should see some improvement in the next 36 hours.

Please keep him in your thoughts and I will update tomorrow.

Sunday, September 14, 2008

Graft vs. Host Disease

Sam again. Day +39

Unfortunately, since leaving the hospital, Graham's nausea and vomiting persisted and his skin also developed a rash.

It looked like he was suffering from Graft vs. Host Disease (GVHD), which is when the new stem cells attack fast growing cells in his body such as the skin and gut.

This is not unexpected and a degree of GVHD is actually wanted as it also means that there is some Graft vs. Leukaemia (GVL) going on which can eliminate any undetectable leukaemia cells that may contribute to a relapse further down the track.

As you can see from the diagram above any unrelated transplants (such as Graham's Cord Blood Transplant) have a higher risk of GVHD but a reduced risk of relapse so the Doctors have a fine line to walk when treating the disease as they want to eliminate the GVHD and allow a degree of GVL.

They did a Skin Biopsy and a Gastroscopy with Biopsy last week and the GVHD has been confirmed.

He was re-admitted to the hospital on Friday to start back on the IV Nutrition as he has lost a lot of weight and has been unable to eat and they started Steroid Treatment for the GVHD yesterday and he should be feeling better soon. Once the GVHD is under control, they will taper off the steroids and watch for any flare ups.

It is disappointing to have this setback and the whole process is much more difficult than either of us had imagined but he is heading in the right direction and I am sure he will be back with you soon.

Friday, September 5, 2008

The Good News Continues....

Sam again.

It's Day +30 today and the good news keeps coming.

Graham had his Day +28 Bone Marrow Biopsy on Wednesday and we got the results today.

The bone marrow cells are all normal and 100% from the unexpanded cord blood stem cells (from Australia!) which means there is no sign of his immune system or the leukaemia. The new cells are working hard and producing Red Blood Cells (RBC), Platelets and White Blood Cells.

It was also the first day that his RBC and Platelets have increased without infusions so all is looking good.

He is still suffering a bit with nausea and fatigue but they are switching one of his anti-viral drugs today that has been wasting his minerals. So hopefully once his magnesium, phosphate and potassium levels are all normal again, he won't feel so tired.

He is also coming off a drug used to combat Graft vs Host Disease (when the new immune system attacks rapidly dividing parts of his body such as his skin and gut lining) as he only has a minor rash and this drug may be causing his nausea.

The picture above is of Zozobra and was sent by our friends Penny, Daniel, Fiona and Ciara in Santa Fe.

Penny says "Last night we kicked off the Santa Fe Fiesta with the burning of Zozobra. In the 1920's an artist started this tradition of burning Zozobra, or Old Man Gloom, who is burned in effigy to symbolically dispel the hardships and troubles of the past year.

Zozobra is a 60+ foot high marionette (largest in the world). Daniel has been involved in building Zozobra since he was small and now we take the girls along to stuff him with shredded paper and to paint him. On the night fire dancers taunt him while he throws his arms around and growls until finally the fire dancer "wins" and sets him alight. For years it has been a tradition to put "gloom notes" into the stuffing of Zozobra, when burned, the hardship/sorrow that is in the gloom note is gone. So, this year we put a gloom note in about Graham’s long tough fight, to send wishes that this will be over soon and you can all return home together as a family and to send our love and very best wishes to all of you."

What a wonderful sentiment. Thanks guys.