Dylan is getting bored in hospital but that is expected. The “poo” tests for C Diff came back negative. I expect that the diarrhea is due to the chemo and antibiotics combined with laying in a bed 24 hours a day 7 days a week. I was told today that Dylan can be discharged on Sunday or Monday as that is when the antibiotic course will be completed (10 days post a negative culture). Dylan has had 2 platelet transfusions and 1 blood transfusion over the past 2 days, but his counts are on the way up, with his ANC (neutrophils) reaching 0.4 we must have at least 0.5 before they will consider discharging us. Dylan continues on daily injections of GCSF to keep his counts rising. One bad thing though, Dylan has developed a running nose today. I don’t know why, he has not left his hospital bed for 2 weeks, and no one sick has visited him and everyone washes their hands when entering the room. I am fine, I am tired but not sick at all. Hopefully it’s nothing. He has no fever or cough but he did complain his eyes were watery. If we do get discharged on Sunday, Dylan will have the temporary line removed and will have no lines, yes that’s right, no lines until he gets his Medi Port put in on the 28th. He has not been without a line since he was diagnosed, so this will be strange, but nice. However, if Dylan requires blood or platelets before the 28th, he will have to have a temporary I.V placed into his arm and that thought is terrifying him.
Great, amazing, incredible and totally unexpected news…As some of you are aware, Dylan’s initial Make-A-Wish was to go to Queensland to all the theme parks, but Dylan was never in a position where he could go on his wish trip. When we arrived in new York, we knew that Dylan needed to change his wish, just in case he didn’t make it back to Australia. Dylan changed his wish to having daddy and Cain here in New York at Christmas time. This wish has thankfully been granted by Make-A-Wish. I always felt bad for Dylan, like he was cheated out of his wish, because no child should have to wish to be a family at Christmas time, every child should be with their family at this time of year. Now for the great news...we received this email from Make-A-Wish in Australia, and this is what it said...
I hope that everything is going well in New York. We’ve all been following Dylan’s progress in the newspapers and magazines in Australia.
We’ve had a very interesting offer and we thought that Dylan might be suitable to take the offer up. We thought of Dylan for so many reasons. Naturally he is already in the USA, so that makes travel easier, but we also thought that he had an awesome story, and that you have all been through so much to get him to the USA. To add to that, Dylan's original wish was to go to the Gold Coast, so we thought the theme park correlation was also suitable.
As you may be aware, this year is Disney’s 50th Anniversary. It is also Make-A-Wish Australia's 20th Anniversary and Make-A-Wish International's 25th Anniversary.
Disney is inviting each Make-A-Wish Foundation International affiliate to send a wish ambassador (wish child) and to help commemorate the Foundation's and Disney's Anniversaries. These ambassadors will help share Disney's message of hope, strength and joy, while taking part in some very magical events.
We thought that Dylan might like to be Australia’s Ambassador, with you accompanying him.
Families will spend their days at Disneyland and each evening will come together with other wish families and Make-A-Wish leadership to celebrate.
If you think that Dylan would be keen for this adventure, and that it fits around his treatment dates, could you please let me know as soon as possible.
Can you believe it! I saw Dylan’s doctor briefly and mentioned what had been offered to Dylan and how would it effect his treatment. The doctor said, we should take the opportunity, it’s a wonderful once in a lifetime offer. So I have completed the forms and await to hear back from Make-A-Wish with flight details. It will work out that Dylan will really only be delaying his chemo by 1 week because he cannot have chemo until after his Medi Port is in place on the 28th. The Make-A-Wish trip is 5th October - 8th October, and chemo will commence on 10th October. Dylan should be well and in great form to enjoy the 3 days. The trip is just for Dylan and I, Tim and Cain will not be coming. I keep calling Dylan “Mr Australia and Mr Ambassador” We are so excited, we never ever thought we would be going to Disneyland!
Something to share...
This afternoon, one of Dylan’s favorite nurses was chatting with me about a spooky experience and we got onto the subject of angels. Dylan over heard us and he said “I talk to angels” I replied "yes I know you do" then Dylan said “When I had my surgery, the angels came with me because you couldn’t be in the room with me” I just looked at his nurse and we both smiled, I just know that what Dylan says is true, he has taught me a lot and he has given me faith. I truly believe in angels, why wouldn’t I, I live with one everyday!