Saturday, November 26, 2005

Thanks Giving

Happy Thanks Giving everyone! We had a wonderful thanks giving day here in New York. We left the Ronald at 7:15am and went to Times Square to see the Macey’s Thanks Giving Parade from the Helmsley - Spear building. The view was fantastic and we didn’t have to stand out in the cold weather. The balloons were amazing, I have never seen anything like that before. After the parade we walked to Chris and Justine’s for our Thanks Giving Lunch, and what a feast they gave us! The food was delicious and the company was great.

Friday morning we went to clinic and Dylan had his electrolytes and CBC blood tests. The doctor was not in, so we did not get the official scan results yet but we will get them on Monday. Dylan was sent home with fluids for the weekend and his blood counts are slowly rising again. Last Wednesday when Dylan had his MIBG scan, so did a few of our friends. Alina had her’s done and she had fantastic news that her results show she is NED (Clear!) Way to go Alina! Our other friend Nick had his scan the same day as Dylan too, his results were so good, that the doctor called them that night to tell them the news. Nick is 15 and usually the neuroblastoma teenagers have a lower chance of survival than the younger patients, but here is Nick defying the odds with flying colors, it is such great news. Our friend Hazen had his scan also but unfortunately the results were not as they had hoped, and it seems his disease is progressing. Please keep Hazen in your prayers, he is such a brave boy and he has been through so much already. This disease is so unpredictable, so aggressive and ugly, I just hate it to so much. I have to keep reminding myself that for every disappointing Neuroblastoma story there is also a good one, like I said this is such an unpredictable cancer and every child seems to respond in such a different way, we must never give up hope and never give up the fight.
The weather is getting really cold now and every day we see ice on the road and pavement. The ice is so slippery, so we have to be really careful and look for it when we walk and cross roads. This morning was a fantastic day’s event organized by Team Continuum. I rallied up almost 50 people from the Ronald McDonald House at 7:15am and a bus came to take us all to the Morning Show at CBS studios outside FAO Schwartz for a live broadcast. The kids were all given great gifts and saw a live band in the studio as well as being in the background for the weather man. Next stop at about 9:30am was to New Jersey, at Lamborghini Bergen County, for breakfast by Commence bank and then police escorted car rides. More than 20 cars including, Ferrari, Lamborghini, Maserati, Bentley, Lotus, Corvette, Dodge Viper and Porsche all took very excited kids for a thrilling experience on the highway. The children’s faces were priceless, and they even got to go in 2 cars of their choice. I heard the drivers talking after the first drive and they were saying things like “Oh the kids face when we took off, I loved it!” I think the drivers were getting as much of a thrill watching the children’s expressions as what the kids were having the rides. Dylan got to go in a silver Dodge Viper with a Nascar driver and then in a Super charged Corvette, he had a smile from ear to ear, he loved it so much. Donna got in a blue Ferrari and then an orange Lamborghini. After the rides, the families were given a Lamborghini bag with a poster and cap. The drivers were having such a good time that they offered to take the children for more rides, but the police escort had left by then and we needed to get back on the bus. On the trip back, the bus was very quiet, I think everyone was totally exhausted. Rose, Donna, Dylan and I joined Paul, Diana, Chris and Justine for lunch on the West side and then by 3pm we returned to the Ronald. The four of us were so tired that we all got in our pajamas and went to bed, waking at about 6:30pm. Rose and Donna are suffering from a bit of jet lag I think.
Tomorrow Dylan and I wil take them to Time Square to visit Toys R Us and they can see the Barbie House, Ferris Wheel and Jurassic Park Dinosaur. On Monday, Dylan will start the trial again, which will continue consecutively for 2 weeks. We will be in clinic all day during the week, so hopefully Rose and Donna find the courage to venture out on their own to see the sites of New York. Donna seems well, she has put on weight and grown some hair since we saw her last. She still needs her wheelchair and suffers from pain in her arm as well as the brittle bones. Paul has plans of getting her a consultation while she is here. We need to get her hearing assessed as well as a scan for the spots on her lungs. From what I understand, Paul has found some doctors who are donating their services to evaluate her condition. Next Saturday Team Continuum are having their annual Party and we have arranged for 25 kids from the Ronald to attend. I am really missing Tim and Cain more than ever today, maybe due to the anticipation of their arrival on the 18th of December. I am also feeling very homesick. My grandmother died yesterday, she was my last living grandparent. She was very old and had a lot of old age health problems, so her passing was not unexpected. I am upset that I cannot be home to console my mother, and also my brother as he was her care giving and she lived with him for many years.

Don’t forget about the online benefit poker game coming up and it just got even better, UltimateBet has added $1,000 to the prize pool of the tournament that will benefit Dylan. That means that not only will Dylan benefit from this tournament, but the 1st, 2nd and 3rd place winners will benefit as well. If you place 1st though 3rd you’ll walk away with a share of the $1,000 prize pool. So please join us on Tuesday night to raise some money for Dylan and possibly win some money for yourself. This prize is being donated by UltimateBet and will not come out of the money that is raised for Dylan.

The tournament details are:

On November 29th, 2005, Operation Oz Kids USA and Benefit Poker will be holding an online Texas Hold’em tournament where all net proceeds raised will go directly to Operation Oz Kids USA in support of Dylan.

For more details on the event visit Operation Oz Kids

Should you have any questions please contact the member services team at