posted June 16, 2005 12:10 PM         

Last week a vicious tumor was found wrapped around his cervical spine pushing onto his skull. After a week in Philly wondering what to do about how to approach removal of this tumor, they decided to fuse the vertebrae in his neck and go in through his jaw and mouth to the back of his throat to remove this monster. They were able, after 10 hours of surgery to fuse the neck and and an additional day and half in surgery, to remove 90% of the tumor en bloc. They believe he will be strong enough to begin chemo in a month. He has tolerated the surgery quite well, we are told, despite the fact that there are only titanium plates holding his head onto his torso. Despite all this, look at the special strength in this child's eyes. Here he was trying to "smile" for the picture, notwithstanding what they did to his "smile muscles." If there is a God in heaven and he can really make a mircle happen, we sure would like to cash ours in for this child. So, calling all compassionate people on the Internet! Please pray for Alan Jr.

Some healing light and prayers for this little guy from you all, will make a huge difference.

Please also send healing light to his Mom, Carrie-Ann, and Dad Alan, as well as the other members of the family, so that they may have the strength they need to help them through this time.

I will keep this site upto date.

Love and light

Angeldust

posted June 16, 2005 01:45 PM         

I know what you mean pixelpixie, I had an over powering sense of healing go through me when I read about this little guy. There's something a little special surrounding him...not in the least his parents and an incredible aura of love.

I will forward all postings on to his family.

Because miracles happen on this website!

Angeldust

posted June 19, 2005 01:03 PM         

Angeldust

posted July 01, 2005 04:59 PM         

A3 is currently in his 5th week of chemotherapy, with 53 more weeks to go. As I get more information, I'll be sure to update to this website.

The separation drives me crazy, so now and then I do a google search for Alan - that's how I found this very sweet site. I can't tell you how much it means to know that he has so much support from so many wonderful people!

posted July 05, 2005 12:47 AM         

Angeldust.

posted July 20, 2005 04:52 PM         

The following is the latest update from my dad:

Dear Friends and Family,

Alan's situation reminds me of the spaceship in Douglas Adam's "Hitchhiker's guide to the universe" because it had an engine that was powered by 'improbability'. We have so far had the improbable discovery of this tumor thanks to Bruce Senter, and the improbable fantastic surgery (on a patient that was considered to be inoperable) thanks to Jay Storm, and are awaiting the improbable results from Jean Belasco and Robert Lustig (radiation oncologist). On second thought, I'm far from sure that these are mere improbabilities, but seem to fall closer to those things that can be better described as miracle's.... We pray that the miracles continue for our son.

Returned today from a 2 week 'vacation' to Philadelphia. Mrs.. Joan Conby, Alan's wonderful teacher there at CHOP called to point out to us that his being at CHOP possibly saved our lives; we were planning this vacation period to go to London, of all places.

During the time there Alan began his radiation therapy. It will run for 21 more sessions (they took the 4th of July off). So far he has tolerated it well. Last Thursday he began his current (3rd systemic, 4th intrathecal) chemotherapy. He had become so septic after both of them that they delayed the current one for a week. His gram negative sepsis this time was Klebsiella, as opposed to the Serratia that he had after the first one. The gram positives were both staph I believe.

The good news is that his MRI was clear of tumor. The rhabdoid tumor is apparently so aggressive that it can, and often does return during chemotherapy and radiation therapy; there was no evidence of it on the MRI (bear in mind that he also had completely negative visualizations during the time we spent chasing migraine headaches (wrong diagnosis) and juvenile rheumatoid arthritis (totally bogus diagnosis) for many months during the last year). But finding no evidence of tumor is infinitely better than finding evidence of tumor.

The week's respite was a good one; time spent with less nausea [he did ask me during the last week if his nausea would ever go away] and consequently more rest was wonderful and made him feel better. I just pray it did not give the tumor a chance to regroup and grow. The radiation therapy effects will apparently continue for about 6 weeks after it finishes so excluding surgery, his most vulnerable time yet is during the next 10 weeks. So if you find it in your hearts, please send a prayer his way.

The two included pictures are A3 and Jill, his physical therapist playing chess. It was his victory, of which he was justifiably proud; and a mug shot. the red circle under his left eye is not an incision but the mark made by his looking (with intensity, as he seems to do everything) through a kaleidoscope.

Charlotte McClelland's husband Mike had a successful heart and kidney transplant last week in Birmingham, Ala-bama; it is wonderful and long awaited news. So if you think of it, please keep him in your prayers too, along with A3 and Carrie Ann and Ann Walt, who has been a major help with Alan's care this summer. Carrie Ann especially has risen to the challenge and shown tremendous strength and resolve and love and determination that her son will survive this ordeal, so if you can, please remember her.

Love, Alan

posted August 16, 2005 03:21 PM         

Please keep sending your prayers and light, there's a long way to go...