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Post by Jackie on Feb 17, 2011 17:23:56 GMT -5
Marnie told me she is REALLY impressed with Ayden's speech ;D
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Post by Myria on Feb 18, 2011 11:50:51 GMT -5
me too! It has really been coming along fast the last few months! He will repeat anything you say, it is awesome! He counts to 10 too, he loves to count anything. At the clinic, they have to give him 3 of the probe covers for the thermometer before he will let them take his temp, he counts them and waits patiently for "4!!" then he gets another one when he stands on the scale "IVE!!!!" it's so cute, then he gives them all back. He is all about routine.. : ) we took him to disney on ice last night, he LOOOVED it!
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Post by Googsmom aka Jennifer on Feb 20, 2011 9:31:18 GMT -5
Video? I want to hear his precious voice
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Post by Myria on Feb 22, 2011 8:09:20 GMT -5
Jenn I sent you a link : )
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Post by Myria on Mar 3, 2011 9:43:39 GMT -5
Hi everyone! First of all, let me thank each and every one of you who has been praying for Ayden and our whole family. I cannot begin to express how much this means to us- Your love and support from across the miles (and a few oceans) has been truly amazing! THANK YOU!!!!
Now for your update :
As of last Tuesday, Ayden has completed the most grueling difficult phase of his chemotherapy "delayed intensification". We had made it through the entire round without any hospitalizations (with the exception of one scheduled overnight stay) when we went in for a lab check and the last dose or ARA-C. While we were in the hospital, he developed a fever of 38.1. Barely barely a fever, but enough to warrant a 48 hour hold to monitor him. Of course the fever subsided immediatley, and he was bouncing all over the bed the rest of the time we were there, but they still didn't want to let him go home until his ANC was back up above 500. After begging with the Dr to realize that he was not sick, and was safer from germs at home rather than in the hospital, she relented to letting him go home once it hit 250. Well. Sunday ANC was 186. his lowest point or "nader" Monday it was 286, but he had another 38 degree temp. ugh!!!
Dr. said if no fevers for 24 hours he can go home tomorrow. well, Tuesday his ANC was 586 and rising! They thought it would take at least a week to bottom out and come back up, he did it in 4 days!!! Ayden is a rockstar!! So we have been home since then and doing great! of course i wish he would eat more, but he's eating enough to maintain his weight.
We start interim maintenence next Wednesday. That means spinal tap every 10 days for 40 days. Please please pray specifically that this spinal chemo will protect his brain from cancer, and that the medicine he is given will not cause any long term learning problems(a common effect) He has been learning so much and doing so well throughtout all of this, I can't bear the thought of him losing everything he knows. I love this little guy so much, he is my hero. He has been so strong throughout all of this, and I know your prayers are helping him. Thank you again!
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Post by wrblack on Mar 3, 2011 14:24:14 GMT -5
Thanks for the update. And very glad your little rock star is doing so well. But, boy, doesn't sound easy for anyone. -- Bob
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Post by Myria on Mar 4, 2011 9:02:43 GMT -5
Yeah, you've got that right Bob, it hasn't been easy on any of us. But hey, we do what we can and play the cards we're dealt, right? Somedays I really do wish it was the nut flush and not 7 2 off suit that I'm holding. But I have a feeling we'll end up with a full house in the end
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Post by Jackie on Mar 4, 2011 10:44:32 GMT -5
Myria...everything is relative...but when I first began as an occupational therapist in pediatrics at Kansas U Med Center in 1970..there was NO remission for most leukemias. I remember the joyous celebration when they achieved their first remission there...so at least almost 40 years later we have come a long way in curing this. Rough rides for both patient and family and friends...but worth the big payoff. You are always in my thoughts and prayers and I admire your upbeat attitude. Marnie speaks so highly of you and your family!!!!
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Post by CC on Mar 4, 2011 23:57:01 GMT -5
Prayers, HUGS and Love to you all Your adorable little cool dude aka Ayden is one of my hero's too !! CC ~
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Post by Googsmom aka Jennifer on Mar 5, 2011 10:39:40 GMT -5
I LOVE Ayden!! {{{{{HUGS}}}}
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Post by mg12061 on Mar 7, 2011 9:40:00 GMT -5
So glad to hear that things are looking up. I pray for nothing but good news. What a challenging journey your family has been on. I agree with Jackie we've come so far with this disease and it's an awful thing but to actaully see children cured of this is just amazing. Thanks for the update. Mary Grace
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Post by Myria on Apr 26, 2011 8:06:57 GMT -5
ok I am going to be super lazy and copy and paste an update from FB.. Hi everyone, I just wanted to share with you all an update on Ayden's treatment- for those of you who don't know, Ayden was diagnosed with acute lymphoblastic leukemia in Sept. of last year. He has been through several rounds of pretty intense chemo since then, and has been a super trooper through it all! He had his last chemo treatment on Thursday and he is starting maintenance treatment in May- What that means is we have done everything we can to get rid of the leukemia and make sure his blood is functioning the way it should- so far so good, all the tests have shown no sign of any blasts in his blood. Maintenance chemo is going to last for 2 years, with clinic visits once a month and occasional chemo treatments to ensure that the leukemia does not return. Thank you all so much for your prayers, well-wishes and cards, it really has helped : ) If I could ask for a specfic prayer, it would be to protect him from the leukemia returning, and that no other cancer will grow (which can happen from the chemo) Thank you all for the love and support shown to my little man XOXOXO **Also- his hair is growing back!!!** and....we get to hang out with Marnie a little bit on Wednesday! YAY!!
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Post by Myria on Apr 26, 2011 8:09:24 GMT -5
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Post by Chris too on Apr 26, 2011 10:08:48 GMT -5
I'll be adding you, Myria
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Post by laurasnowbird on Apr 26, 2011 22:21:21 GMT -5
What a fabulous update, Myria! That is the best news, and of course our family will prayer for no recurrence and no new cancer. Glad to hear that his hair is growing back, he's such a handsome little fellow!
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