To start off, please know all is OK now! We had quite a trying past week or so though. This was right off the heels of a great week with friends visiting from Nepal (I will write all about that soon!) which was so much fun!
Elan started tilting his head a bit - a huge sign of his cancer being back. There is really no way to express or help anyone to understand what this means or how it feels to see your child have something so telling start up but basically think of the worst feeling you can think of. To be honest, it was right up there with the moment we sent him down the corridor for the resection back 1 year ago. Honestly top 3 worst weeks of our lives ever. Glad in the past and hope to NEVER have to feel them again. We know that we are living on extreme borrowed time and the odds are terribly stacked against us but we are moving forward.
The good news is that he stopped doing it. There was a few things going on that could have been the cause. First, he is walking MUCH better and has brought his Michael Jackson's "Thriller" move down to more of just an odd kid playing the piano all the time look. He still has one hand up a bit in the air for balance but it came down in one day so could have just been his way of compensating. thankfully Jennifer, his lovely Physical Therapist saw it and totally was convincing it was playing a part.
Second, he has had one wicked cold, which leads to not sleeping well which leads to things like the tilt out of pure tiredness. We had an oncologist appt and it was the first time Jessica had seen Elan since October in person and not just reading his files. She was so impressed with his progress but said if it didn't go away in a few days we would do an MRI. Thankfully it did after us just breaking down and giving him ibuprofen and just forcing him to sleep and rest 2 days.
One great thing that came out of the appt was that since Elan has responded so well to the radiation she does feel he has a shot at survival. Not a huge one but still a shot! We originally were given 1 in 10,000 chances type odds from her going into treatment. She now feels that we are in the 1 in 10 or even 2 in 10 range. To someone reading this they may think we are insane to think great odds, but to even be given any odds is truly amazing! Of course, this really is her just grasping from thin air as Elan is the only child ever to be given the exact treatment - the Elan protocol. Everyone in the clinic did say Elan is by far the best case they have seen of AT/RT so far (they have had 5 or 6 other kids over the years). and his quality of life is beyond thrilling for them. We know that the next 2 years are so critical and the likelihood of the cancer returning is extremely great but the fact we hit 6 months out from treatment as well as next week hitting 1 year from diagnosis is monumental. If you look up AT/RT on Wikipedia you will read the odds he has already beat.
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| biggest hit??? Dinosaurs so far! First thing they saw. |
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| big box of toys from gran shirley!!! |
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| cool thomas the train bridge. Still wants to sleep with it... not happening btw. I do have to draw the line. |
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| notice Elan's smile getting more symetrical!!! |
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| booty from Gran Shirley! |
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| elan and his patch for 2 hrs... he is doing great with this! Even though he needed to be in bed at the time.... |
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| Elan is in a big boy toddler bed |
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| First night!!!! (had to transfer to crib as Elan had "too much fun" |
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| Elan having fun time as a real boy. Toys courtesy of gran shirley! |
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| Elan totally making full speech strides... making all sorts of noises like car, washing dishes etc |
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| Elan playing age appropriate!!!! Even older!!!! |
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| mader helping dinosaurs out. |
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| dino eating another dino |
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| Poor Elan.... too many toys to choose from. |
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| conversation with Elmo |
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| drawing later that day of Elmo conversation - all done by Elan and telling Gran Lolly what all he drew! This was one of those days I wish I was there for the conversation! |
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| for past week Finn obsessed with puppets. First of the bunch at school that started it all Notice photo of him and the person -really great person drawing by the way.... |
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| panda is now elan's |
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| there are now over 20 people in the hizzzous |
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| this is just hte beginning... |
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| finn gave panda to elan.... the boys were given a panda bear by lovely friends from the congregation in Indiana when Elan in treatment back this summer and Elan sleeps with it so Finn gave puppet to Elan. OF coruse ELan now sleeps with panda toy and now panda puppet. Poor panda puppet is kind of a mess now but still in bed with elan! |
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| notice how much better Elan's eye and mouth looks... BTW I do have other outfits for Elan however he only has 2 shirts I can let him wear without a fight. This day I was able to get a shirt underneath for warmth (OK Yes not terribly cold but still in the 40's!) |
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| doesn't he look so pathetic and like a protestor??? Save the Pandas Elan!!! |
