It is mid-afternoon on Tuesday and Jacques and I are on our way to Disney. The kids are in their own car behind us. We have just left City of Hope. Again. For the second time in 24 hours. Yesterday around 5pm we all got to go ‘home’ to Ronald McDonald Home (RMH) in Pasadena. William was weaned off all the IVs and got patches and oral meds for pain. When we got to RMH a small crowd and a surprise party was waiting for us. There was a Magician, friends, ‘family’ from RMH and most of the guys from Pasadena Fire Department. About 40 people. They have all pulled together to pay and put together this event for William. What a great time we have had - the magician had us rolling with laughter and I enjoyed watching Will’s face. He did not have a lot of energy and yet could muster enough together to laugh and enjoy the moment. After the show Will had the honor to shave the heads of 12 of the Fire Men. It was funny, it was awesome, it was heartbreaking.

 We all know why they were doing it and yet none of that was talked about; we watched William as Slim’s apprentice nervously shaving the first two heads and after that he was the pro. He even laughed at his own handy-work when a few of the heads came out really unique. There was a back-up team that fixed the funny hairstyles. It was around 8pm when Will came to sit next to me on the couch and when I asked he admitted he had pain. He said it was about a 6 (on the kids scale of pain) and it was everywhere. We gave him his blanky and a Dilaudid. He was asleep with in 1 minute. It actual scared me how quickly he went to sleep and I kept on watching his breathing. He had a fever of 100 by the time Jacques and I went back to our hotel.

 The next morning Lois woke us up early to say they are taking Will to ER. William had a night of hell; a lot of pain, crying, panic attacks and muscle spasms. By the time Grandpa and Grandma got to ER the nurses have figured it out; it was a combination of pneumonia in both lungs and withdrawal symptoms from the strong narcotics. A quick IV, stronger patches a couple of hours of monitoring, more antibiotics and a few Kodak moments with the clinic staff, and we are on our way again. As the day was almost over we have missed the Character Breakfast at Disney but we were ready for the rest of the day as VIP visitors.

On our way out of the hospital we ran into Dr Anderson. He reminded us that we always have an open door to him and COH facilities no matter what. He understood that we want to go home, but also said that if we change our minds that William will have access to the best medical and psychological treatment.

Thank you to all the amazing people at COH that have touched William’s live.

Tuesday afternoon – so we made it to Disney after all. We were all tired. Will is in a wheel chair but we had to walk. Knowing that this was for William we kept on reminding each other to Cowboy-up. And after the first ride it was easier – the adrenaline got me going. After four rides we were all done. It was 6pm and we had to go take a nap before the 8pm Character dinner at Goofy’s.

Tuesday evening – Goofy’s was sooo much fun. Lot of attention, photographs, comfort food and laughter.

The amazing men at Pasadena Fire Department (PFD) have made this all possible; The access to the park, shuttle tickets, hotel, and dinner. The whole caboodle. Or rather the whole VIP exclusive treatment. You guys rock. Thank you so very very much for making it possible for us to make memories.

Fast forward to Wednesday – Jacques and I decided to give the kids some space. They went back to the park late morning and spent most of the day there. At 6pm we picked them up to go to the ice hockey game, Anaheim Ducks against the Red Wings (Detroit). William’s eyes were shining and he was happy to fill us in about all the rides they did but the 12 minute drive to the arena was not enough time for them to tell us everything they have done. We had a private hospitality suite with food and drinks, all paid for – again arranged by the PFD. Wow! They are awesome! William spent time with Ducks’ #8 player and received a signed shirt and a hockey stick. About 90 minutes after we got there some of the PFD guys and their better-halves arrived. It was touching to see their interaction with William – there was a special bond. About 45 minutes later Will told his Mom he had pain. It was time to go back to the Hotel.

Tomorrow the kids are doing a helicopter trip in the morning and later the day Dr Andersen’s and Lois’ hair will be buzzed. Yip – it is St Baldrick’s day. I will send you photographs, but I will not be there.

Grandma Sally.