Monday, July 18, 2005

Family again - MIBG result

Click on this link for up coming fundraiser in NYC Karaoke Night

Dylan is featured in Australia's Herald Sun newspaper today (Wednesday 20th in Australian time) web link: Article

WOW, what can I say but WOW! We are so thrilled to be a family again, so much has happened over the last few days. On Friday Dylan had a platelet transfusion in the morning and we met up with Paul at the Kimberley Hotel after lunch. There we met Valerie who is responsible, together with Paul for the lovely accommodation for the weekend at the Kimberly. It was a beautiful hotel and the king size bed with awesome. Attached to the hotel is a restaurant called “George O’Neills” and we had a complimentary buffet breakfast each morning that was shear heaven, the food was fabulous. The New York Post newspaper met us at the hotel and accompanied us to the airport via a black stretch limousine, driven by Moira, compliments of “Music Express”. Dylan just couldn’t contain his excitement over the limousine, it was an incredible experience, we felt like movie stars! At the airport, we met up with Jim Bliku from Qantas and Operation Oz kids, and Bec from the Australian Consulate. Dylan was given a ride on the airport transport buggy and thank goodness for all his play station experience because he was even allowed to steer it all by himself! Jim had arranged for us to meet Tim and Cain on the boarding thingy (don’t know what it’s called but it is the tunnel thing that connects up to the plane). The flight was delayed in Melbourne for 4 hours so they missed their scheduled connecting flight in LA and ended up on an America Airlines flight to JFK. They arrived at 11:15pm, the New York Post photographer took photos as we all fell into each others arms when they came through the plane door. On the trip back to the Kimberly, Dylan leaned back stretching his arms on the seats and said “Hey Cain, how do you like my Limo!” Dylan felt so famous! Paul gave each of us Team Continuum medals, and welcomed us all into the team as a family, it was quite an honor. On Saturday we just stayed at the hotel and relaxed, Dylan wasn’t feeling very well, I think he had just over done it all and was very tired from all the early hospital visits and all the excitement and joy that Team Continuum have done for him over the week. On Sunday the Sunburnt Cow had their fund raiser for Dylan. It was a terrific day, and we had great fun. NY1 television was there and filmed the event plus did an interview with us all. Team Continuum presented us with Video phones donated by Motorola, which is so wonderful, we will be able to still see each other now, when Tim and Cain return to Australia, that is of course providing we work out how to use them! Martin Henderson, the actor from the movies, “Torque”, “The ring” and “Bride and Prejudice” cooked the BBQ with Dylan, and served the many guests that arrived. Swimming races were held out the back, which was a blow up pool with battery operated toy divers, frogs and dolphins that people bet on to win the race. A huge thank you to Heathe, Martin and the staff at The Sunburnt Cow for such a wonderful event. Dylan fell asleep in his stroller so we headed off to the Eight Mile Creek for their regular Sunday fundraising for Dylan. Dylan woke up after about half an hour and then cooked his second BBQ for the day! Adam and Ashley met us there for photos and interviews for the Herald Sun newspaper back in Australia. By 5:30pm we were all exhausted and retired back at the hotel for an early night. Tim and Cain are suffering jet lag along with trying to acclimatize to the very humid and hot New York weather. Cain is particularly finding it hard to adjust and has been waking up through the night. The first night, Tim woke hearing a knock at the door of the hotel room at about 4am, when he answered it, there was Cain in tears, standing in the hallway! Tim asked what he was doing and Cain said he couldn’t sleep, Tim then asked why he was in the hallway of the hotel and Cain said he didn’t know, we figured he was sleep walking! Needless to say, we now dead lock the door from the inside. I am so glad he didn't sleep walk down the elevator and into the New York streets! Dylan and Team Continuum featured in the New York Post newspaper today on page 19 Web link: Read New York Post Article
The article says that Dylan has a rare bone marrow and spine cancer, even though I told them it was a nervous system cancer, oh well, the Australian papers did the same error, calling it a bone marrow cancer!

Today we checked out of the hotel and went to clinic. Hooray, Dylan’s counts are finally up and we no longer have to give him GCSF so hopefully his platelets will start to rise now. Dr Modak told us that the scan results show that there has been no change, no new disease and no decrease in disease. I asked where exactly disease remains and he told me that Dylan has Neuroblastoma evident in his left shoulder extending to the top of his arm, a spot on his skull, spine, ribs, pelvis and left upper leg. All these areas are the same as when he arrived, the only part that has cleared is his right knee, bone marrow and of course his abdomen after surgery. Dr Modak explained that MIBG treatment will be available by mid September but that it was not going to be a home run, meaning it has a 40 percent chance of working. Dr Modak told me that there is a new trial coming in 6-8 months which will be “Hot 3F8” therapy, and that he believes it will be very promising for Dylan. I think “Hot 3F8” will combine a type of MIBG or radioactive compound to the existing 3F8. Dr Modak said it will work well for children with heavy bone disease such as Dylan and that Dylan will qualify for the trial. There is also vaccine therapy coming up which Dylan will also qualify for but Dr Modak said he feels Dylan has too much disease for it to work. Dylan has enough stem cells for 2 rescues, so we need to have one for MIBG treatment and we will need to save the other for the “Hot 3F8”. In the mean time, Dylan will continue to have the chemo he has had for the last 4 rounds to keep his disease stable until we can start the MIBG treatment in September. We are still waiting for the bone marrow biopsy results, the previous were clear, so fingers crossed this result will show it has remained clear. For those interested I have copied the scan reports below, the increased uptake does not mean an increase in disease, it just means that more of the MIBG tracer was taken up by the Neuroblastoma cells themselves and therefore highlighter brighter on the scan:

MIBG scan

FINDINGS: Foci of increased uptake in the thoracic and lumber spine appear slightly more prominent in the present study. Foci of increased tracer uptake in the skull, left proximal humerus, left posterior chest, right anterior rib, bony pelvis, and left supraclavicular regions appear unchanged.

IMPRESSION: Abnormal MIBG study consistent with multiple tracer avid lesions essentially unchanged since May 2005.

CT Scan of Chest/Abdomen/Pelvis

FINDINGS: There is n thoracic lymphadenopathy. There is no right pleural effusion and a previously seen left pleural effusion has resolved. There is no pericardial effusion. At the left lung base there are improved streaky changes, probably atelectasis. There lungs are otherwise clear. A central venous catheter with the tip in the caval atrial junction is again seen.
The liver is unremarkable. The spleen now appears intact and homogeneous. Multiple surgical clips are again seen in the midline. A previously visualized PEG tube has been removed since the prior study.
There is no abdominal or retroperitoneal lymphadenopathy. The small amount of ascites previously seen has now resolved.Diffuse mixed lytic and sclerotic osseous lesions are unchanged.

IMPRESSION: Since 7th March 2005
Resolving postoperative changes
Stable diffuse bone lesions
No evidence of recurrent disease