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5th September 2008 Day +30 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 (which were from Australia!). This 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 for another today as it has been wasting his minerals but he couldn't use the new one till his white count had recovered. 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 pictures to the right are of Zozobra and were sent to me today 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. |
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29th August 2008 Day +23 Graham was discharged from the hospital this evening. The kids arrived on Wednesday with my Mum and they were sooo excited to have Dad home tonight. Mum said that every time they heard the elevator start up outside the apartment door, they kept saying "It's them, it's them!" And eventually it was us (after we collected the cache of drugs from the Pharmacy that he needs to take each day) and Dad was swamped in hugs and kisses. Graham is still feeling nauseous and tired but is much improved and most importantly he is officially engrafted with an Absolute Neutrophil Count of 3,200! He reached the 500 milestone a few days ago and is now well within normal limits. So the worst is over and now he just has to regain his strength while being very careful for the next 12 months. He has lost all the immunity he gathered over his lifetime and as a result is very susceptible to bugs that would have not been a problem in his pre-transplant life. He can't be anywhere there is a crowd of people he doesn't know as they may be carrying germs that could at best really set back his recovery if he was to come in contact with them. In 12 months' time he will then get all his childhood immunisation shots again. He can't get them before then as his fledgling immune system couldn't cope with the live vaccines until it has this amount of time to establish itself. Jack has requested pancakes for breakfast tomorrow morning as a celebration! I told him that was a wonderful idea. |
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25th August 2008 Day +18 Graham's Neutrophils have been bouncing up and down since they increased to 60 a week ago. They were at 80 yesterday and thankfully today they have tripled to 240. We are hoping this is the sign that they will now really take off. He is still really fatigued and nauseous and what I would describe as suffering from "shell-shock". I figure that he has been through so much what with arriving and expecting to have the transplant, to finding out he had relapsed, to the chemo not working, given 2 months to live and then finding out that the chemo had actually worked and getting the transplant; he just needs some time to process everything. All is well and hopefully he will be out of hospital before my Mum and the kids arrive on Wednesday. We can't wait to see them. |
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17th August 2008 Day +11 Well those Neutrolphils have kicked in with a grand total of 60 today! Graham needs 500 to be considered officially engrafted, so he is on his way. The nausea is subsiding somewhat but he still can't eat anything and even me suggesting different types of food made him feel sick. Not much else to report but just wanted to let you know the stem cells are doing their job and his neutrophils should should continue to rise this week. Will keep you posted. In the meantime have a look at what the wonderful scientists at the SVI have discovered! |
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16th August 2008 Day +10 Unfortunately, that rise in the WBC on Day +6 didn't persist and Graham is still waiting for his neutrophils to come in. I have just posted over on his blog (as he is unable to do so) so I won't repeat myself here. Click here to have a look. A couple of thank-you's while we wait patiently for those neutrophils: Firstly to Louise Purton, Carl Walkley and all the staff at The St Vincent's Institute in Melbourne. The SVI is an independent medical research institute which conducts laboratory research into the cause, prevention and treatment of high-impact diseases such as cancer, diabetes, obesity, bone diseases, Alzheimer’s, cardiovascular disease and infectious diseases. SVI is affiliated with St. Vincent’s Hospital and the University of Melbourne. Louise used to work at The Fred Hutchison Centre here in Seattle and is good friends with Carrie Stein who worked on expanding Graham's cord blood cells (and gave Jack and I her basketball tickets!). Louise got in touch to say the SVI staff were having a morning tea for Graham and that she and Carl would like to donate their Air Miles with United Airlines to us. The morning tea raised $328.00 and Louise has booked my Mum and the kids to come over and see us at the end of the month. Every turn on this journey brings us in contact with the most amazing and generous souls. The second thank-you goes to Janine Mitchell who not only has taken our Jack in as her 2nd son while we have been here in Seattle but she has been baking yo-yo's every week since we left and selling them at St Leonard's and Mentone Girls' Grammar. She has been forced into an early retirement due to shoulder surgery but has emailed to say that the Middle and Upper school staff at St Leonard's and Junior school staff at Mentone Girls Grammar raised $721.00 for our fund. Thanks again Janine and of course to everyone who dug deep to enjoy the sweet treats. |
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12th August 2008 Day +6 Graham is feeling better today and they have identified the cause of the 41 degree temperature. Another nasty gram negative bacteria. He is on the right antibiotics for this and hasn't had a temperature since which is good news. He continues to feel nauseous and is still unable to eat. He is also very tired and is spending a lot of time sleeping. His hair started to come out in big clumps today so we had one of the nurses shave it all off. They also managed to unhook him from his life-sustaining pole for an hour today so he could have a shower, shave and get new sheets. I left him sleeping to go to the supermarket this afternoon and on the way there I got a phonecall from Dr Delaney saying that there were 150 White Blood Cells in a sample taken a couple of hours before to check his platelets after an infusion. They have been at zero for the last 4 days. This is very good news and another sample will be taken at midnight tonight and we will have a differential (ie; types of White Blood Cells present) tomorrow so hopefully we will see some neutrophils. Once the neutrophils kick in, they will begin to repair his gut and he will start to feel better very quickly. |
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10th August 2008 Day +4 Graham had a bad day today. He is really suffering with nausea and vomitting. He can't seem to move at all without being sick. He isn't able to eat anything either so he is now hooked up to IV Nutrition until he can eat again. He also had a very high temperature this afternoon (41 degrees) with rigors . It was very distressing for him but they gave him some pethidine which stopped the rigors almost straight away. The temp persisted so they have put him on a number of antibiotics to cover him for all types of bacteria that may be present in his blood until they get the cultures back from his blood and then they can taper some of them off. The pethidine did confuse him somewhat and he was telling me about how busy it had been at the Xmas party! Not sure what year! I am hoping his neutrophils will start to come in soon so that this may be as bad as it gets for him. More soon.... |
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7th August 2008 Day +1 All is well today and apart from some nausea and fatigue, Graham is suffering no ill-effects of his transplant yesterday. I am also very pleased to be able to annouce that the Charity Auction Dinner held on Sat 26th July was a huge success thanks to the wonderful efforts of St Leonard's College and the organising comittee. This small team of Year 1 parents packed a powerful punch: The total amount raised came to a massive $116,090.00!!! By all accounts it was a fantastic evening and I have received many emails from people saying that there was a very strong sense of community present on the night. We are so very grateful and it truly was a team effort. Thank-you to everyone who attended the evening, those who donated items for the auction and of course those very generous people who sucessfully bid on the night! Click on the pic of James Bateman and Hamish Blake doing their stuff for more of the glamourous crowd. Thank-you everyone for such a fantastic effort. |
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6th August 2008 Day 0 Well, a big day today! A quick description of events before you watch the videos: Graham had the unmanipulated stem cells at 10:39am this morning and they were infused over 20 minutes. Then 4 hours later, the wonderful and very clever Dr Colleen Delaney hand delivered the expanded stem cells straight from the lab and they were infused at 3:25pm again over 20 minutes. Graham was given benadryl and ativan as pre-meds prior to the first infusion to combat any reaction (notably nausea) to the preserving agent used on the cells, so he was quite drowsy but was a bit perkier for the second infusion. Please click on the links to the right to witness this momentous occasion! Thank-you to everyone involved in getting Graham to transplant. And to Anna for the balloons today! We wait now for the baby stem cells to migrate to the marrow and start producing blood cells. Most importantly, when his Neutrophil count reaches 500 for three consecutive days, Graham will have officially engrafted and can be discharged from the hospital. The subsequent 3 months is critical to the long-term success of the graft and I will continue to update along our journey. |
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5th August 2008 Day -1 Anna, who has the same AML as Graham (t(6;9) + FLT3) and has kindly been looking out for us with gift packs and delivering Indian food to us at the hospital is pictured right with Graham earlier in the year. She has just emailed me to say she sent out a request to all her friends and family here in the USA in support of our fundraising. Click here to read. Thanks Anna, we really appreciate your concern for us. Well it's almost Day 0 and Graham's new birthday! Thank-you to everyone for your love and support over these very difficult 3 months. We finally made it!! Stay tuned for a video of the big event.... |
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4th August 2008 Day -2 Sleeping, sleeping, sleeping was all Graham could manage yesterday but is feeling much better today. It's his 2nd last day of the total body irradiation and transplant day is coming around very quickly. His red blood cells dropped to a level where he needed his first transfusion today. All is going well and on track. Not long to go now... |
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3rd August 2008 Day -3 Graham has had his 3rd dose of radiotherapy this morning and as soon as he got back to his room, he started vomitting again. It really is powerful stuff. His white blood counts are dropping rapidly now, though his red blood cells and platelets are holding which means he doesn't need any transfusions yet. The picture to the right is Graham waiting for his afternoon dose of radiation yesterday and he was keeping the mood Australian....The sound track he chose while he was sitting on his bicycle seat being irradiated for 40 minutes was "The Church". Click on the image for more pics. More later... |
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2nd August 2008 Day -4 Graham had his first dose of radiotherapy today. The Nurses had him up at 6am for fluids and anti-nausea drugs in time for the radiotherapy at 8am. So he's feeling quite exhausted at the moment and is having a sleep. He has another dose of radiotherapy scheduled for 2 p.m. and then the same again to the next three days. Yesterday, some volunteers at the hospital came and gave Graham a hand-knitted rug, which you can see on his bed. it certainly brightens up the room and I thought it was a lovely gesture. Graham is losing his appetite more and more each day as a result of the chemotherapy and radiotherapy and I expect he will be absolutely exhausted by the time he receives his stem cells on Wednesday. Dr Delaney e-mailed me on Friday to say that the stem cells are growing nicely in the lab, so it will be exciting to learn how many cells he has infusion next week. |
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30th July 2008 Day -6 Graham has been sufferig a bit today with nausea and vomitting from the Cytoxan but they have added some extra anti-nausea drugs which seem to be working well. Graham is very excited that today may be his last ever day of chemotherapy! A quick thanks to everyone on the Blue Team at the SCCA for their dedication and care in getting Graham into remission. Dr's Claudia Astigarraga & Hans-Peter Kiem are pictured right with Graham just before he started conditioning this week. |
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30th July 2008 Day -7 A quick thank-you to Marc and Harry Simpson for shaving their heads to raise money for Graham. They raised an amazing $800 US. The lovely Tracey (pictured right with her big Bro on a night out in Seattle) kindly hand delivered the cash last Thursday. It is now very quiet here with Graham in hospital for his conditioning and Tracey back in the UK. Graham received Fludarabine yesterday and Fludarabine & Cytoxan today. He will get another dose of the two drugs tomorrow, a rest day on Friday and then two doses of Total Body Irradiation on Saturday, Sunday, Monday and Tuesday with the infusion of the Umbilical Cord Blood Stem Cells on Wednesday 7th August - Day 0 and his re-birthday! He is feeling well and I will update tomorrow. |
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28th July 2008 Day -9 Today we went to the labs with Dr Delaney to see where the New York Umbilical Cord Blood Stem Cells are being expanded. Click to the right for more pictures. The cells began their expansion on Monday 21st July and they are growing well. Graham starts his conditioning tomorrow (chemotherapy and radiotherapy) and I will let you know how he gets on in the next few days.
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20th July 2008 Laury's Soup Kitchen Our beautiful friends Laury, Michele, Megan, Gail and Tracy had a fundraising soup kitchen last week at Todd and Laury's home in Wollongong and in conjunction with a jewellery stand run by the kids, they raised $1,000! Thanks so much guys. We love you !!! Click below and to the right for pics and video.....
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18th July 2008 Well, he did it!! There is no sign of the Leukaemia by flow or morphology and Graham is in complete remission. The pnuemonia is under control and it is full steam ahead. The cords were ordered straight away. One is from New York and one is from Australia. The New York cord arrived today and the Australian one will arrive on Saturday. The NY cord is the one that is going to be expanded and Dr Delaney and her team are coming into the lab on Sunday to get eveything ready for it to be thawed, the stem cells extracted and then expanded. Graham has been having his workup tests and he will be admitted to the hospital on the 30th July to start his conditioning and have the transplant on the 6th August. We are ecstatic that Graham is now in the best possible position for the transplant. Thank-you all for your continuing support throughout this roller-coaster ride!! |
Dr Colleen Delaney, the brains behind the expansion trial. |
10th July 2008 Long time no post again... I am sorry but things seem to change so quickly here, we don't know if we are up or down. I will try and sum up what has been happening over the last few weeks. Graham's fungal pneumonia is responding to treatment and is stable at the moment. They will do another CT in a week or so to check on it but his cough has gone and he doesn't feel like his chest is so heavy any more which is positive. On the weekend we had to go into the hospital on Saturday and Sunday nights as he had a temperature and the blood cultures revealed that he had a very dangerous and highly resistant gram negative bacterial infection. It was very lucky that his neutrophil counts had recovered enough to fight off the infection (see picture on the right) as it can be fatal in immunosupressed patients. He is now on an IV antibiotic that the bacteria is senistive to and it seems under control. He had another Bone Marrow Biopsy on Monday and and we received the results today. It shows there has been "a marked improvement in the overall degree of myelopoiesis. However there still appears to be an increase of monocytic forms, which vary in distribution ranging from 5-10% in different fields." This means that the normal bone marrow is recovering well and looks much healthier but there is a persistence of the leukaemia. The pathologist who read the slides said that this was an improvement on the last biopsy and the overall value is just above 5%. This is still too high for Graham to be eligble for the expansion trial so he is going to have another biopsy next Monday to see if the disease has reduced even further making him eligble. We are so grateful for this second chance at getting to transplant. Just a few weeks ago we were at 25% and preparing for the worst. Graham's doctors today said that it is very unusual to have such a late response to chemotherapy but they don't mind unusual if it is good! We don't mind either. As long as we can get to transplant and beat this disease once and for all, we are happy to take the scenic route. Although of course, the scenic route does cost a bit more! Jack has returned to Melbourne and is having a great time staying with his friend Mitchell. My Mum is heading back to Melbourne on the weekend with Poppy in preparation for the beginning of Term 3. I think she is well and truly over having to look after a 3 year old, particularly when said 3 year old decides to start the car and drive it down the driveway and into the rose arbor!!! |
Scanning Electron Microscopic View of a Neutrophil engulfing Anthrax Bacteria. |
27th June 2008 I haven't updated about Graham's Bone Marrow Results since Jack arrived as it has been a bit of a bumpy ride to say the least. The chemotherapy clinical trial (Clofarobine & AraC) that Graham was on required him to have a Bone Marrow Biopsy on day 14 which is very early and not usually done. We expected his marrow to be completely empty of both normal cells and leukaemic blast cells but it showed 9% blasts on Flow Cytometry and 17% blasts on Morphology. This was disappointing but another biopsy was scheduled for day 21 and it was hoped that it may give a better picture. The day 21 biopsy was taken last Friday and the inital result (Flow Cytometry) was a promising 7%. The morphology results came back on Sunday at 25% which is a huge discrepancy. Usually the flow cytometry is the more accurate test and morphology is either the same or lower than flow. The lab Doctors went back to look at both results and agreed that the correct reading was 25%. As you can imagine, we were very disappointed. Even though they felt sure this was the correct result, they scheduled another biopsy for this Wednesday to make sure. We met with our Doctors straight after the biopsy as they had presented Graham's case to the whole faculty that morning and they wanted to tell us what the feeling was about what to do next. The consensus was that Graham wasn't a suitable candidiate for a transplant because he still has fungal pneumonia and that the tumour burden was so high that he would almost certainly relapse. They offered him more chemotherapy but weren't hopeful. You can imagine how we felt. It was a very upsetting day today. However, around lunch-time, I got a call saying that Graham's Doctor wanted to meet with us at at 4:30pm. Expecting the worst (ie; that the BMB from yesterday showed increased blasts), we went along. Well, Dr Riddell comes in and says the flow cytometry from yesterday's biopsy shows 3% blasts and the morphology shows btw 6.5 - 10% blasts. So the clofarobine must be having a late effect. We were completely shellshocked. Anyway, as a result things look much more promising. Graham is going to have a CT scan tomorrow to see if the pneumonia is under control. If it is at least stable, then they want him to have another round of chemo with VP-16 to try and get him into a true remission and to give him more time to get over the pneumonia before the SCT. We are so pleased but emotionally exhausted... |
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27th June 2008 Click on the photo on the right to see what Poppy has been getting up to with her cousins while staying at Nanny's farm at Lake Cargelligo. We are really missing her but she is having a great time with Samuel, Alice and Joanna, although I think she may be leading them astray somewhat! |
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17th June 2008 Georgia Neill of Melbourne, contacted me a couple of weeks ago to say: "Hi Samantha, I recently saw the billboard for “a donor for Grahram” while stuck in traffic at the intersection of Station St and Canterbury Rd, unfortunately its now been replaced with a lovely “crisp, refreshing, white wine” Lindemanns Early Harvest none the less!! However, I found myself Googling you all, a week later and devastated by your plight, and your heartbreaking trek to the US, with kids here in Melbourne. So I’m now going to run a fundraiser event, I’m thinking like a Biggest Morning tea or Girls Night In or something. Once its all done, I’ll let you know how it went and do the direct debit. Good Luck with Clorarabine. Wishing Graham all the very best." Well, she is a woman of her word and she has organised "Upwey's Biggest Afternoon Tea" on Saturday 28th June. Click on the image on the right for more info. Many thanks Georgia. |
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15th June 2008 Graham has finished his chemotherapy and he has been in and out of hospital with infections that they are controlling with IV antibiotics. We should have some results this week about whether the treatment has put him into remission, so it is an agonising wait. The most exciting thing this week was the arrival of our Jack! Thanks to Barbara, Mark, Hana & Maya for escorting him to LAX. We have been having such a great time with him, including going to a Seattle Storm Game (thanks to Carrie Stein at The Hutch) where we met Lauren Jackson after the game and she signed Jack's Basketball! Click on the photo to the right to see some more pics. I will update again once we know about the bone marrow results...
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30th May 2008
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Graham had his bone marrow biopsy yesterday to see if the chemotherapy had put him into remission. We got the results today and unfortunately instead of the number of blasts decreasing, they have increased from 4% to 15%. This means his disease is refractory to the chemotherapy drugs used. This was extremely disappointing news to say the least. Graham now is going to have a new chemotherapy drug (clofarabine) to try and get him into remission. The drug is being used in a clinical trial to treat adults with AML and it has shown very promising results.
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29th May 2008 The Moorabbin Leader has done another story on Graham. Click here to read... |
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27th May 2008 Chris & Mike Tarling invited us to their wonderful house for a late Memorial Day BBQ on Tuesday afternoon. Chris met Mike in Temora, NSW while on a 12 month teacher exchange from Seattle. Can you belive this view? Click on the photo to the right for some more pics. Thanks for a lovely afternoon..it was such a great break. Chris and I even went kyaking on the lake - heaven! |
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26th May 2008
Graham was admitted to the University Washington Medical Centre (dubbed the "Husky Hilton" because of it's proximity to the Husky Stadium) on Friday as he had a temperature of 39 degrees which indicated he had an infection somewhere. This is a dangerous situation for anyone without an immune system to be in. So... They cultured some blood and found the bug that was causing the trouble and put him on the appropriate antibiotics. All is now well and his neutrophils are on the rise so we may at last be ready to start planning for the transplant this week. He is being discharged today and we will know more later this week but in the meantime, click on the photos on the right to have a look at the amazing views from his room. |
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23rd May 2008 Happy 7th Birthday to our beautiful boy! We are so sad we are missing your Birthday this year but we are so proud of how brave you are being while Mummy and Daddy are in America. You have grown into funny, clever, loving and wonderful boy. It just seems like yesterday that Daddy and I brought you home on that hot summer's day in London back in 2001. How time flies!
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22nd May 2008 Thanks to everyone who organised & attended "A Gig for Graham" in Graham's hometown of Bedford in the UK. It turned out to be a wonderful night by all accounts with lots of people meeting up for the first time in years. And thanks to your efforts, we have another $6,600 in the fund! Thank-you so much. |
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20th May 2008 Today we had coffee with Anna who is recovering from a recent transplant. Anna also had t(6;9) with FLT3+ AML, so you are looking at two very "special" people! Anna has a great attitude and it was great to sit and chat today. Graham is still neutropenic so just waiting for the marrow to start producing those white cells and then hopefully a bone marrow biopsy next week to make sure his marrow is clear of leukaemia.... |
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19th May 2008
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It was a beautiful weekend here in Seattle. On Saturday we headed over to Alki Beach. And on Sunday we sat in Ruth and Louis' Mercer Island garden for relaxing BBQ. Have a look at the video on the left... |
17th May 2008 Lynne Horvat, pictured right, was diagnosed with AML at The Alfred on the same day as Graham, Friday 13th April 2007. As a result, she and Graham formed a bond and always asked after one another whenever they were on 7 East during 2007. In January this year when Graham was undergoing treatment for his relapse, Lynne was also on 7 East to investigate her dropping blood counts after a transplant in Oct 2007. She emailed Graham after our appearance on ACA and was making decisions about what treatment to have next. After arriving in Seattle, Lynne's daughter Kate emailed us to say that she had developed pneumonia and lost her battle on Friday 2nd May. We are so saddened by Lynne's death and extend our sympathy to all of her family. |
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17th May 2008 A big thanks to the Upper School Students of St Leonard's. They had a "Week for Graham" last week which raised over $1,500. Thank-you so much. What a wonderful example you all are for the younger students at the school. We are continually humbled by the support by everyone involved with the kids' school. The photos to the right are of the Year 11 Committee Students selling cakes and bikkies during the week. A big thanks must also go to Janine Mitchell for her unending supply of home-made yo-yo's to the fundraising effort! |
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14th May 2008
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Here is a little video following a typical day in Graham's life at the moment. Most importantly, he has finished the week of chemotherapy and he is now neutropenic which is the aim of the chemo. This means that his white blood cells (specifically his neutrophils) are at zero and now we have to wait for them to recover. While waiting for them to recover, he essentially has no immune system so we have to be very careful about him getting an infection of any sort. Hopefully his marrow should start producing in the next two weeks and then he will have another bone marrow biopsy to make sure there is no or minimal leukaemia and then on to the transplant! |
13th May 2008 The Quireboys are at it again! There is a benefit gig at the Hard Rick Cafe in London on Thursday night as part of their new album release. Get along if you find yourself in the Capital. Thanks once again guys. |
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11th May 2008 Since sending out the thank-you email yesterday, I have had a lot of emails saying we are in fact the heroes but the reality is that we could never have done this without the amazing support from you all these last weeks. I also received an email from Kerry, the wife of the Crown Prosecuter Alex Clout, who died in a tragic accident while camping at Barrington Tops National Park In NSW a couple of weeks ago. He donated to our fund on the 8th April, just two weeks before his death and Kerry said to me in her email "I want you to know that Alex was a generous and compassionate man and I am glad our small contribution helped." We are indeed grateful for his generosity and we extend our deepest sympathy to Kerry and all her family at this most difficult time. |
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10th May 2008 I have just sent out an email to all our wonderful heroes to thank-them for their support and to give an update on our journey here in Seattle. I only have the email addresses of people who donated via PayPal. So for others who donated via a Bank Transfer or by Cheque, please click here to read the message which goes out to everyone who has supported us. Without you, this would not be our reality. |
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9th May 2008 My Mum filled in for me at the Mother's Day Breakfast with the kids on Friday at school.. I was so sad I missed it. When I spoke to Jack on Thursday, he asked me if I would be home in time for Mother's Day Breakfast next year!! I assured him that we would be home much sooner than that! |
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9th May 2008 This was in the Herald Sun on Tuesday in the Sports section.... |
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7th May 2008
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Graham has started treatment today and we are recording his journey via video. Watch our first movie on the left and Click here to see his YouTube channel. Keep an eye on this for updates. He received one dose of chemo injected over 10 minutes and then the rest is delivered 24 hours a day for the next 5 days via a pump that is attached to his Hickman Line. This means he can stay out of hospital unless he develops an infection and can just be seen daily as an outpatient to make sure everything is fine. As an interesting aside, Dr Hickman still works at the SCCA inserting the lines that he developed in the 1970's!
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7th May 2008 The guys at Omnigraphics have struck again! The billboard is now at Canterbury Road, Box Hill. Click on the picture on the right for a better view. |
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4th May 2008 Thanks Caryn, Alastair, Kate, Kerrie and everyone involved with getting the kids to the MCG on Saturday for the Hawthorn vs Collingwood game. Click here to see some photos of the enthusiastic tin-rattling (Jack was very proud that he dinted the top of his tin) and barracking that took place! Another fantastic win to the Hawks! |
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4th May 2008 All good but a slight change of plans. As you know they did a biopsy a week ago to see if Graham was still in remision (< 5% blasts) before transplant and the reading came back 1.7%. So on Friday they did another one to see how fast the disease was growing and that biopsy showed 4.2% blasts so the number more than doubled in a week. Graham was technically still eligible for the transplant but we wouldn't have time to wait for the expansion technique as they have to have a week to grow the cells in the lab. So the choice now was start on the standard double cord transplant (no expansion) or have a dose of chemo to knock back the blasts and proceed to the expansion transplant. We have decided to have the chemo this week because there is some evidence to say that if you proceed to transplant with some leukaemia present there is an increased risk of relapse post transplant and we really want to do the expansion protocol as they are having such good results with less side effects. Potentially increases our time here but we want to do the job properly! |
Graham with Dr Colleen Delaney who is responsible for the research and development of the ex-vivo expansion technique. |
1st May 2008 Alastair has organised some tickets for the kids at St Leonard's to go along to the match at the MCG on Saturday against Collingwood. They will be heading there early and rattling some tins at the fans before they head in. The Herald Sun did a story in their Friday Paper about the fundraising efforts. |
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29th April 2008 Results are in! Graham is technically in remission (less than 5% leukaemic cells in the marrow) but there are 1-2% cells showing up so we got here by the skin of our teeth! Treatment can start as planned but they may give him some low dose chemo as an outpatient to keep the nasties at bay while they are getting the cords ready. More later..... |
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28th April 2008 Ritchies' Community Benefit Card Program donates a percentage of the money spent by their customers to their nominated club, school or charity. If you shop at Ritchies, you can now nominate "a donor for graham" as your charity. |
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28th April 2008 The Moorabbin Leader ran a story last week about the fantastic effort by the St Leonard's College McMillan House families to raise funds for Graham's treatment. Click here to read. |
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27th April 2008 We made it to Seattle on Tuesday and we are so pleased to be here. It was heartwrenching of course to leave the kids but we are so focused on beating this thing and just know we are in the right place for that to happen. The staff at The Hospital are just fantastic. Graham had a Bone Marrow Biopsy on Friday and we will get the results tommorrow. If he is still in remission then we can proceed.... Thank-you to everyone for your support. Without you all, we would never have made it here. The fundraising is continuing whilst we are here as we had to borrow some money to put with the amount raised to get the treatment started. Follow our jouney in Photos and hear it all from the Horse's Mouth |
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25th April 2008 |
Click on the image to the left to watch the story about us leaving for Seattle that aired on A Current Affair on Channel 9 on Tuesday. Thanks to Elise and all the team at ACA for doing a such a great job once again. |
18th April 2008 Last weekend, my brother Damian got hitched to the lovely Jenny. What a beautiful and happy bride she was...and it was a wonderful evening by the beach in Wollongong. I just want to thank Damian for starting off the fundraising campaign a few weeks back because his email was the impetus we all needed to get things going to raise the money needed to start Graham's treatment in Seattle.
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17th April 2008 Update on the London Benefit Gig Thanks to Mark, Ed, Helen, Iain, Jeff, everyone else who was involved with organising the gig and all those who went along last Thursday. We now have another $US2,000 in the fund! By all accounts it was a great night and we would have loved to be there with you. |
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17th April 2008 ITV in the UK did a feature on Graham in their Anglia News. Here is the clip.
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16th April 2008 Groove Family Disco is holding a benefit disco for Graham on Sunday 27th April. The disco will be held at The Glasshouse, 51 Gipps Street, Collingwood from 1.30 - 4.00pm. Thanks to Charmaine for organising this for us. Click on the image to the right for a pdf flyer about the disco. Get along if you can, it is great fun. Graham took Poppy a couple of weekends ago and she grooved the afternoon away! |
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16th April 2008 The McMillan House Disco, Art Auction and Year 1 Art Raffle was a HUGE success raising $22,100! Thank-you to everyone involved. We are overwhelmed at this result.
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CLICK HERE to have a look at the fabulous artwork, the artists and the winners.
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16th April 2008 Shane Crawford took a lie detector test on The Footy Show last week to raise money for our fund. With good humor, he and The Footy Show have added $6,500 to the kitty. Thanks very much guys! |
 The Moment of Truth |
8th April 2008 Here is the flyer for McMillan House Blue and Green Disco, which is being held tomorrow night with proceeds being donated to our fund. We are so grateful of the support that the St Leonard's Community has shown us in our bid to get Graham to Seattle. |
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8th April 2008 |
We were on the Channel 9 News in Victoria tonight. Click on the image to the left to watch the report and thanks so much to Carolyne & the News Team for another great story to help us get Graham to Seattle. |
8th April 2008 |
Click on the image to the left to watch the story that aired tonight on A Current Affair on Channel 9. Thanks to Elise and all the team at ACA for doing a such a great job. |
7th April 2008 Click here to have a look at the billboard that went up this week in Preston in Melbourne thanks to all the guys at Omnigraphics. Here is the PDF of the Poster for a closer look.
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6th April 2008 Click here for a story in the Beds on Sunday about the Quireboys' acoustic benefit gig for Graham in Bedford on April the 20th. More info can be found at The Esquires website and here is the poster for the event showing a very young Graham! |
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2nd April 2008 We have been in the news again, this time in the Moorabbin Leader. Click here to have a look... |
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2nd April 2008 Graham was in a band in the 1980's called Feline Groove with Guy Griffin of The Quireboys. With the help of Pete Burridge and Charlie Codrington, Guy has organised an acoustic benefit show with The Quireboys for Graham at Bedford Esquires on Sunday 20th April. Also appearing will be Cutting out, the Swamis, Amy Lee, Max Milligan, Chris Corney (the Ravines), The 'A' band with more acts to be confirmed. Thanks so much guys! |
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1st April 2008 We have been in the local news today - have a look... Thanks to Ross Walker and all the St Leonard's Families for organising this with the Bayside Leader. What a great bunch of people you are! |
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1st April 2008
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Have a look at this fantastic video! Erica is looking for a mixed race donor. Please forward the link to your friends to spread the word AND.. become a donor! |
31st March 2008 The fundraising is gathering steam and as you can see on the front page we have raised just over $30,000. Thanks so much for all your support. It is overwhelming and heartwarming at the same time! Speaking of support, Mark Coles, who replaced Graham as bass player in the band "Red Road" in 1996 has been organising a benefit gig in London with the help of Ed Hudson, Helen Turner, Iain Black & Jeff Braithwaite who were all in Red Road with Graham way back when. I actually met Graham at one of their gigs in London in 1995 so it's wonderful that they are all back together to help us out now. Thanks guys! Details
are below. It's sure to be a fantastic night so if you are in London
make sure you get there! |
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19th March 2008 Penny's Bone Marrow Donor Recruitment drive in Santa Fe was a success yesterday. She managed to recuit around 50 people mostly of mixed race or ethnic minority backgrounds. And she thinks there will be an agreement with her work (the Santa Fe Council) to continue with sponsoring recruitment drives. Well done Penny and thanks again! |
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18th March 2008 I just wanted to remind everyone, even though we are running the fundraising campaign below, it is important to remember that there are thousands of people around the world still waiting for a donor. People of mixed race and ethnic minorities are desperately needed on registries worldwide. Please think about becoming a donor and encouraging others to do so also. Below are three people currently waiting for a donor: Penny is running her Bone Marrow Donor Recruitment Drive in Santa Fe, New Mexico, today. We just want to say thanks again for all your efforts Penny and someone who is waiting for a donor may get their match because of you. :) |
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11th March 2008 Graham still doesn't have a donor and we have been told by his doctors that he doesn't have anymore time to wait for one. If he is to have any chance of survival we need to make a decision about his treatment by the end of March. Without a donor his only chance of survival is a Double Umbilical Cord Transplant. This is a relatively new procedure and we have spoken to the two centres in Australia that have the most experience (Westmead Hospital in Sydney and The Royal Melbourne Hospital in Melbourne) about their outcomes. Unfortunately they both only have a 30% survival rate so we have also spoken to the Fred Hutchison Cancer Centre in Seattle in the USA. They have far superior outcomes at around 88% over the last 2 years. What we now want to do is to raise the required $US 500,000 to get him to the USA next month to start this life saving treatment. Please click here for more info on how you can help.
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3rd March 2008 Well Graham is home! His counts tripled on Friday night so they let him out on Saturday afternoon. The kids were so excited to see him. We took them to the park on Sunday and had a BBQ tea with friends in the evening. Thanks for a wonderful Greek inspired meal Marianne and Pete! It was great to have the whole family back together and feeling a bit more normal. We are going to make the most of this week as Graham will have a bone marrow biospy later in the week to see if the chemo has worked and then we will have to decide what to do next based on whether he is in remission or not. But for now we are forgetting about the nasty "L" word! Poppy also had her 3rd Birthday last week and Graham was allowed out for the day. She had a fantastic time, starting kinder and having a party in the afternoon. I have added some photos of her various poses and with her cards and her "big teddy" that she so desperately wanted!
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18th February 2008 Graham is still waiting for his blood counts to come back up and is feeling quite frustrated and fed-up at the moment. The fact that his mouth is full of sores making it very difficult to eat and talk doesn't help matters. Still no donor and I have set up a facebook page to try and recruit more people. Please have a look and encourage people to join up. Penny is doing a great job organising her drive in New Mexico and it is slated for March 18th. She will be doing some newspaper ads, press release and radio ads as well as getting the info out with paychecks and by email to the 700+ employees at her work, many of whom are Native American.
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12th February 2008 Graham finished this last round of chemo last week and he is feeling good, all things considered. No fevers, no nausea and no major weight loss, so he has really sailed through this lot compared to the rounds last year. Hopefully his counts will start to rise this week and he can come home next week in time for Poppy's 3rd Birthday and 1st day at Kinder. We still don't have a donor and you may remember that Graham has a rare genetic combination that includes genes that are prevalent in Indiginous American Indians (North & South). So these past couple of weeks, we have been in touch with Penny Ellis-Green, an ex-girlfriend of Graham's who is now married with 2 girls and living in New Mexico in the USA, to ask if she would help recruit Native Americans to the National Marrow Donor Program. She has been fantastic and really has the ball rolling and will be holding a drive at her work as well as getting the message out to the Native American communities. Thanks so much Penny and fingers crossed that we will find a match for Graham.
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3rd February 2008 Graham went for a routine blood test on Tuesday 29th Jan 2008 and unfortunately some of his blood levels (neutrophils and platelets) were a bit low. His Doctor scheduled a Bone Marrow Biospy for the next morning and told us to come and see her on Friday for the results. However, she rang late Wednesday afteroon to bring the appointment forward - so we weren't expecting good news . And it wasn't - Graham has 60% blasts in his BM so he went back in to The Alfred Hospital on Friday for another induction chemo. It is so upsetting that it has come back so quickly. It can be such an agressive disease. Only last month, all he had was low level molecular disease and now he has 60% blasts in his marrow. It was very unexpected as he was feeling fantastic and looked the best he has since the treatment last year. It is now imperative that we find a donor so if you have been thinking about joing the registry - NOW is the time to do it!
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15th August 2007 The Bone Marrow Recruitment Drive was a real success on Monday night. Thank-you to all those people that took time out of their busy schedules to come along and give some blood. We had 29 people sign up to the register. It will be 2 weeks till the tissue typing results are back, so fingers crossed! It is a long shot but hopefully one of the new potential donors may be able to help someone waiting for a transplant. Will keep you posted.
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2nd August 2007 Bone Marrow Recruitment Drive Thank-you for your interest in the above. We are holding a Bone Marrow Recruitment Drive with the Australian Bone Marrow Donor Registry where you and any other people you have recruited can come along and give a small amount of blood to be tested. It is going to be held in the Junior School at St Leonard's College, South Road, Brighton between 4pm and 7pm on Monday the 13th August. I need at least 40 people and will be making appointments at 5 minute intervals. What you need to do now is: 1.0 Read this - as it explains everything you need to know about being a donor. In particular, I should point out that you can't just register for Graham but you must be prepared to help anyone in the world looking for a donor if you are a match for them. 2.0 Contact me on 0429 459 089 to say you and your siblings/friends would like to come along and book a time with me. At this stage, I also need your postal address so I can send the forms out ahead of time to save time on the night. 3.0 Turn up and give some blood and maybe save a life! Many thanks, Sam
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1st August 2007 We've been in the news! Have a look here and here.
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28th July 2007 Well.. a donor for graham has a MySpace page. We recently found out that the two alleles they can't match (DRB1*0404 and DRB1*0407) are prevalent in Indiginous American populations. It seems that the registries worldwide need more young males aged 18 - 40 with diverse ethnic backgrounds. So I have been hooking up with men aged between 18 - 40 of the above heritage here in Melbourne on MySpace and hope to have 40 - 50 people in the next couple of weeks and then the Blood Bank will come to us to test everyone. I will keep you posted but in the meantime, if you are interested in participating, please read this first. If you have any questions, drop me a line.
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27th July 2007 Graham has donated his stem cells this week to go in the freezer if needed later. It was pretty straight forward but he did have to go into The Alfred on Wed, Thur and Fri for them to get enough cells so he is glad it is over with now. He is back to work on Monday so it feels like we are getting back to normal.
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18th July 2007 Graham had a check-up at The Alfred today and was given the cytogenetic results from his most recent bone marrow biopsy. The genes are still normal which is fantastic and means the AML is in remission both pathologically and cytogenetically and they can safely harvest his own stem cells as an insurance policy against relapse. He has also been given the all clear to think about returning to work part-time. We are going to wait till he has donated his stem cells next week and then once he recovered from this, our lives may return to some normality!
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13th July 2007 We saw Dr Sharon Avery at The Alfred Hospital last Monday and she said there was still no news on a possible donor. We discussed planning for an autologous transplant and she booked Graham in for a stem cell collection on the 25th July, so we can use them as a back up if we can't find a donor.
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