Well Day 2, it’s 10am, been in clinic since 8am and already the blood tests show that his potassium and magnesium levels are even lower than yesterday! We increased the oral dosages but it appears the arsenic has already kicked in with lowering these levels. We are now waiting for infusions of both before we can have the arsenic infusion, so again today looks like a very long day. Apparently the last patient to have this treatment had the same issues and required infusions everyday, so I am sure this will be Dylan’s routine as well. At least we get the weekends off, and we are out patient, so we can’t complain. Dylan’s appetite seems to have decreased a little so that will not be helping to maintain levels either. I have ordered bananas in today’s lunch for Dylan, he won’t be impressed, but they have lots of potassium…every little bit has to count. Not sure if the research scan will go ahead as we cannot leave the PDH floor during potassium or magnesium infusions. After these 10 days (2 weeks) of arsenic therapy, we will have a 2 week before the next MIBG scan to see if things have improved. During the 2 week break, Dylan will still need blood tests at least 3 days a week and it is possible he may need blood and platelet transfusions as the MIBG therapy after effects kick in and drop his counts.
Thank you to the second grade class at St. Boniface Church who created a Cookbook for their service project this year, to raise money for Dylan. The books were sold and their funds sent to the American Australian Association in care of Operation Oz Kids, huge effort, thank you so much. After the show aired in Australia, a lot of people have mentioned they are organizing fund raising events which is great! Please contact Leanne in Australia at: lennyoz@bigpond.net.au with details, so I can mention them on Dylan’s fund raising page.
W.A.T.C.H. Inc. stands for Waverley Adult Training Centre for intellectually Handicapped people and they are holding a fund raising event to raise money for Dylan. When: Friday 18th August 11.00am Where: 13 Mountain Cresent Mulgrave Victoria, Australia. There will be a sausage sizzle, raffle, t-shirt designing to buy as well as staff and clients shaving their heads for donations. See Flyer on Dylan’s Fund Raising Page for more details and contact information.
Nikki is participating in the Blogathon on July 29th to help raise money for the Children's Neuroblastoma Cancer Foundation The way the blogathon works is that she will post to her blog every 1/2 hour for 24 hours! People will pledge money either for every hour or a total overall donation, ALL of which goes directly to CNCF!!! This will help ALL the neuroblastoma warriors and other children in the future. Please visit Blogging for Christi & Friends for sponsorship details and to read the blog.
