Updated at 1:35pm
It is with great sadness to inform you that Taylor's sister Madison gained her angel wings this morning. I don't know what to say, I am full of grief. Please pray for Madison's parents and especially for Taylor. The other parents at the Ronald McDonald House are all trying to hide their tears from their children. I am not sure how I will tell Dylan, I think I will wait until we return from our trip to Disney. Madison was a very happy and sweet little girl, she touched the hearts of many at the Ronald McDonald House, when you saw her, your face went into an instant smile. We will miss you so much Madison.
Beautiful Angel Madison, may you play safely in the streets of heaven.
Updated at 9:16am
What an amazing time we had at Camp Sunshine in Maine. We traveled up by bus for 6 hours on Friday and returned safely last night. The people, activities, accommodation, atmosphere and food were all fantastic and we cannot thank them enough for such a wonderful weekend. Dylan had great volunteers looking after him during his many activities and I had a great time joining in on parent group activities and sneaking off down to the lake for some rest and relaxation on the paddle boats. Dylan played ping Pong, mini golf, paddled his feet in the pool, went on the paddle boats, made arts and crafts, computer activities and even sang up on stage his favorite song at the moment “She will be loved” by Maroon 5. On Saturday night there was a masquerade party where everyone dressed up in costumes, except Dylan was so exhausted by the days activities, he was asleep by 7pm and missed the fun. But Sunday night Dylan was in the swing of it, and joined in on the wishing boat activity. Each child made a wishing boat, and launched them in the pond with candles, then making a wish, it was really lovely. The weather was perfect, a little chilly in the evenings, but during the day there was not a cloud in the sky and the sun was shining. As you can tell by the photos, the place was great. We didn’t want to leave. A huge thank you to all the management, staff and volunteers at Camp Sunshine, and of course to the anonymous donor who donated the costs of our stay. A special thank you to Dylan’s volunteers Justine, Bianca, Sarah and Robin. I have created a Camp Sunshine photo album in just scroll down to the Camp Sunshine folder to see more great pics. Dylan’s Photo Gallery
Now we are in clinic for a quick check up, Dylan’s port is feeling better each day and he is eating well. Tonight we must pack for our 3 day trip to Disneyland. We leave bright and early on Wednesday morning for a 6 hour plane flight to California, where Dylan is the Make-A-Wish Ambassador for Australia celebrating Disney’s 50th anniversary. We are so excited. Disneyland is something we never thought possible, due to medical insurance issues (we have none!) but through Make-A-Wish it has been able to be done. We return late Saturday night, so you won’t get a website update until Sunday. Then on Monday Dylan may have a 5 day round of chemo scheduled, making this his 13th round. The doctor told me today that they will contact CHOP in Philadelphia to prepare for Dylan to have his MIBG treatment there as it seems there may be further delays with FDA approvals for the treatment to commence here at MSKCC. This will mean traveling to Philadelphia for a consultation and then being admitted for 3-5 days for treatment, then we will return to MSKCC for arsenic treatment and antibodies. Dylan is now having a blood transfusion, I think he must have used up all his red blood cells running around at camp!
