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Post by rlm08 on Nov 2, 2010 14:54:44 GMT -5
Absolutely love that mohawk, Ayden rocks it!
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Post by sd112170 on Nov 4, 2010 14:52:19 GMT -5
Love the hair too....way cute!!!
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Post by Googsmom aka Jennifer on Nov 6, 2010 8:37:31 GMT -5
OMGoodness look how cute that is!!!!
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Post by Myria on Nov 14, 2010 23:30:09 GMT -5
We have now started round 3 of chemo, "interim maintenance" this lasts for 41 days and will mainly be IV chemo, every 10 days, followed by a spinal tap on day 41. We were supposed to start on wednesday but had to push it back one day.
On Tuesday, Ayden was walking across the living room and his central line FELL out of his shirt, and onto the floor. This is the main IV line that runs into his chest and ends in a vein near his heart. He had the stiches that hold it in place in his chest removed last Wed. because it takes about a month for the body to form scar tissue around the line (there is a small piece of velcro attached to the inside of the line that is supposed to anchor the line w/ the scar tissue) -apparently Ayden didn't find that part necessary! I don't think he pulled it out, because there was a dressing covering it. The best guess we have is that the dressing came loose and somehow got stuck to his shirt and the line just slipped out when he was playing. That freaked us out for sure! I thought that he would be gushing blood, and it hardly bled at all. There was just a little tiny drop of blood on the inside of the line itself.
So we spent about 18 hours in the hospital getting a new line put in on Thursday. Well, most of the time was spent waiting for surgery.. He had a bit of a rough time with the anesthesia, and we had to give him a couple doses of fentanyl and morphine to calm him down. That was the first time he has had any issues with that. He was back to his normal self the next day though, running around and playing : ) the one good thing about this is that he now has a port under the skin rather than the tubes hanging out of him- now he can take a bath without saran wrap! YAY!!
Ayden has now lost most of his hair, he looks so much like he did when he was a baby.. I think I may be causing it to fall out faster because I am always kissing his little bald patches.. his little head is so smooth and sweet : )
Oh, and (not so)little Evan will be ONE year old on Wednesday!! Can you believe it!?!!
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Post by Debi on Nov 15, 2010 19:36:54 GMT -5
Happy Early Birthday to Mr. Evan.. man oh man Myria that first year happens fast enough under any circumstance but this year must be a bit of a blur to you so.. give your big grouwn up Evan a hug from Iowa. I must say.. your story about Ayden and his cental line falling out made my heart stop more thanonce. I am sure you are calmer now after the fact but OMG sending you lots and lots of hugs as well as to Evan and Ayden. I know just what you mean about kissing that sweet head because I kissed Gabe's all the time and if you are making the bald patches bigger, well that is just the price of love. He is beautiful and your courage is something~~~~ Enjoy Evan's b'day and I say hooray for ports,ever so much better than Saran wrap!!
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Post by Myria on Nov 15, 2010 20:30:59 GMT -5
Aww thanks Debi! You are right, Evan has grown so much that I feel like I missed half of it, but he is just the sweetest little guy, with the most amazing silly personality, I am just happy to have everyone home together. Ayden just LOVES his brother, they are always hugging each other, and leaning against each other, playing, or reading together, it is adorable! I wanted to let you know that Ayden's Elmo pictures came the other day, he ABSOLUTELY LOVED them! You should have seen the look on his face, it was priceless! Thank you again!!!!
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Post by Googsmom aka Jennifer on Nov 15, 2010 23:58:15 GMT -5
ONE!! Already? No way!! LOL Happy Birthday sweet Evan!
Myria, your a strong Momma! I Pray for your family daily. Give Ayden some {{{{{HUGS}}}} and XXXXXKissesXXXXX from me ok.
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Post by CC on Nov 16, 2010 15:29:55 GMT -5
YIKES Myria that would have freaked me out too Prayers still going out to your Awesome little dude aka "Ayden" ~ what a true Champ he is A year already WOW Happy Birthday Evan ~ Wishing you a WONDERFUL Year CC~
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Post by Debi on Nov 16, 2010 18:31:22 GMT -5
Well am so so happy Ayden got his packet of Elmo pics.. you will have to thank Ms. Thole's class; they are the ones who made it happen. Am printing this thread out so they can read it....just VERY glad Ayden got his dopamine ..er.. Elmo hit!!! Whatever makes him happy will make Ms. Thole's class happy!!
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Post by Myria on Jan 9, 2011 0:35:16 GMT -5
Hi everyone, Happy New Year! We are looking forward to 2011 being a good year for everyone. This Monday Ayden will begin his 4th round of chemo. It lasts for 56 days, hopefully we will be outpatient for most of it. This is the last big round before he starts the maintenence phase. It's called delayed intensification and it involves several new chemo drugs he hasn't had before, and some that he has. (2 weeks of steroids again) I am hopeful that he will do well, but still scared for my little guy! He has been doing very well otherwise, he talks up a storm (mostly one word or 2 word sentences, but hey, I'll take it!) Evan is also talking now, he has the sweetest baby voice : ) These guys are the best of friends, it is so awesome to watch them play together, I feel so blessed~
If you could please think a good thought for Ayden on Monday, he is having chemo and a spinal tap, we appreciate all your prayers- Thank You!!!!
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Post by Jackie on Jan 9, 2011 10:16:54 GMT -5
Prayers and good thoughts from me coming your way for sure...keep us posted.
Jackie
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Post by Myria on Feb 8, 2011 10:43:34 GMT -5
Halfway through round 4! Ayden is doing great, he's been eating well, and had lots of energy and spunk! He is an awesome kid!! Please say a prayer for us tomorrow. Tomorrow is the day we start 2 new drugs, ARA-C and 6TG, and Ayden will also be having a spinal tap and cyclophosphamide(cytoxen) treatment. Which means an overnight stay : (.. but on the plus side, hopefully we get to see Marnie! Jackie, your daughter is so sweet, I know you have to be so proud of her !! She was telling me about her New York trip with our little friend from clinic, she will be such a blast to have on vacation!
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Post by mg12061 on Feb 9, 2011 9:08:03 GMT -5
Many many prayers for you and Ayden today. It's just amazing all that he has been through and still a spunky energetic little guy. I'm so glad things are going well so far. I hope all goes well today. Thanks for all the updates. Praying for you both... Mary Grace
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Post by Jackie on Feb 9, 2011 10:58:45 GMT -5
Hope Marnie makes it in today...LOL...when she called me she was totally at a standstill in traffic and not sure why...LOL...good ole DC!
I hope all goes well with Ayden...tell Marnie to call and give me a report...and yes she is really involved with your special clinic friend...I am happy for her to have all of you in her life. Marnie adores kids...and is a great Auntie as well. She loved 'taking care' of her many dolls growing up too...so she is in the right line of work for sure. She has told me I MUST meet you and Ayden some day!
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Post by Googsmom aka Jennifer on Feb 12, 2011 10:20:47 GMT -5
I love Ayden!! {{{{{{HUGS}}}}}}
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