Wednesday, October 3, 2007

Results are in

This is the banner used at the Loneliest Road Campaign. Unfortunately we were unable to attend the finish line in Washington DC due to transport issues, a bus was not available from RMDH as previously hoped, and our finances did not allow us to travel at our own expense. It was great that when Yvonne (Jack’s mom from England) returned, she had brought back this sign, it really made me very happy to know that even though we could not go along, at least we were there in spirit. From what I am hearing on the grapevine, they managed to raise over $200,000 so that’s fantastic! More fund raising events are being discussed via the “Band of Parents” to raise the money needed to fund the humanizing of 3F8.

I often write about the sad times when children here at RMDH or at the hospital pass away, but today I want to share with you two great successes this week. Jack Brown from England who also fund raised and came to New York for his therapy, is now NED (Free from Neuroblastoma) and was given the news today that he can return to England in a few weeks! Good job Jack, you had some scary times, but now all your bravery and hard work has paid off. Another little boy by the name of Bradley was also given the news of officially being NED yesterday, and can commence his 3F8 therapy to prevent relapse. I am so pleased that this week was a week of encouragement and proof that miracles can happen, giving us the strength to continue the journey of hope.

Dylan went to clinic today. The results for the bone marrow biopsies and aspirations all four samples show no evidence of Neuroblastoma, in other words his bone marrow test came back clear! Yay for good news! The MIBG scan and CT scan show a stable result once again, no new disease and no decrease, but that to me is also a great result. So as it stands Dylan has Neuroblastoma in his femora, pelvis & multiple vertebrae. There are no signs anywhere else. The dose escalated 3F8 took care of those spots in the skull so that has remained clear which is very exciting. The urine tests for HVA and VMA levels are not back yet. I discussed with Dr Modak where to from here and this is what he said. Our options are: Chemotherapy, which would be Irinotecan and Temador – this to me is not something I wish to consider at this time, Dylan has had 5 cycles of this chemo in the past with little impact to his disease, and it made him very sick. A lot of children do cope very well on this chemo but Dylan becomes neutropenic with every dose, losses his hair, gets chronic diarrhea and ends up on TPN due to rapid weight loss. The next option is: Oral chemo in a tablet form, this would be Temador on it’s own. The next option: Clinical trials but Dylan’s platelet count would need to be stable at above 75 to qualify and his counts now have stabilized at 60-70, to qualify for any study consideration would not take place for another month. The next option is: Accuntane for up to another 6 cycles. After lengthy discussion, Dr Modak’s plan in conjunction with my input, is to focus on getting Dylan HAMA negative, to allow him to continue with 3F8 studies, and to harvest more stem cells, especially while his bone marrow is clean. There is another drug that they are testing to see if it can help eliminate HAMA, children have commenced this study and Dr Modak said that if it proves successful in the coming months he would like to put Dylan onto it, in the hope of getting rid of Dylan’s HAMA. The drug is called Retuximab I think and is used in conjunction with a chemotherapy agent known as Cyclophosphamide. Dylan has had this chemo in the past and although it is not pleasant, it will aid Dylan in two ways, it would prepare him for a stem cell harvest and hopefully help to eliminate HAMA. So for now, we are starting cycle 7 of Accuntane on Monday with the view he may get 3 -6 cycles in, depending on upcoming trials and his disease remaining stable. Dylan has a good chance at continuing to remain stable for a while so we should take the opportunity to let him recover and try and get more stem cells while we can safely do so.

Here is the official MIBG report:

Comparison: MIBG scan performed June 2, 2007 which demonstrated numerous sites of MIBG uptake in the axial and appendicular skeleton.

Correlation: None.

Findings: Focal uptake is again identified in the femora, pelvis, and multiple vertebrae which appear unchanged from the examination of June 2, 2007. No new lesions are seen.

Interpretation: Stable MIBG avid disease.

Some people will be happy to see we have some really nice “family” photos that were taken by the RMDH last week, click HERE to view in the recently added photo album.

A good friend of ours has set up a fundraising “Myspace” page for the Dylan Hartung Campaign, please visit by clicking HERE

Sally, Jody and Deb, the scrapbooking bugs, are fundraising once again for the Dylan Hartung Campaign, please visit their blog for details HERE