True story. A few days ago, I walked passed Aida sleeping in her crib and honestly paused to think, "We have a baby." It has been undeniably real for almost 5 months now, but this time, there was the pause. This time, as I watched her sleep with her butt pushed up in the air, I felt the happy gravity of it all. We've been loving every minute of her smiles, funny faces and even her strength, but not so all of the sudden, we found ourselves feeling borderline normal for a minute.
She had her last dose of steroids on Friday. There were a couple of days when I was worried about the withdrawal and her body's abilities, but in no time, she began to improve. I say "I" was worried because, apparently, Mark had more faith. As for the test she was to have, the doctor changed his mind, I guess. He does that. Ultimately, he said if she wasn't symptomatic, there was no need to test for now. Anyway, we've been "big picture" encouraged for several weeks now, but this week has been better for the day to day. As I write this, I can hear her talking to herself on the monitor...in her crib...where she goes to sleep by herself. Like I said, it's not so all of the sudden, and we certainly have a long way to go. At least NOW we can talk about sleep training instead of worrying that she's starving because of steroids. She's definitely not starving. She could probably live on the fat in her double chin/neck for a while anyway.
There really isn't much medical news. Her numbers were really good except that she's slightly anemic. (She's been this same sort of slightly anemic for several weeks so no big worry.) Soon, we'll be spacing out her chemo treatments to every other week...and ultimately quitting it altogether! As exciting as that is, it's a little scary. We're still seeing growth here and there, but it's gradual which is positive. Mark reassures me that the tumors are just at different places in their life cycles - some improving and some that have been stable now beginning to grow. After all, growing is what these things do. Now all we have to worry about is heat rash and hairlessness, right? Incidentally, her hair is growing ever so subtly. Thanks to our steroid free status, we are now to peach fuzz. She'll probably be bald 'til she's two regardless, but now we'll know she's coming by it honestly.
All in all, there's much good news and much left to do. Today, though, the gratitude and hope outweigh the uncertainty and worry.
Thursday, July 26, 2012
Tuesday, July 17, 2012
No News Isn't Always Good News...
But in this case it is. :) We've just been plugging along. DRAMA-LESS. Numbers last week and this week have been good, and her incisions are healing well. She's playing a lot more and has started talking. Also, the tumors that were removed a couple of weeks ago seem to indicate that these ARE a type that go away. Very good news! Of course, the story changes all the time, but we're hopeful this is IT.
Aida seems to be feeling like her old self - good days and bad. Mostly good-ish. All that should improve as well as we finish steroids and are able to stretch chemo to every other week. So here's your chance to pray for a miracle that will amaze the doctors. Aida will have her last (we pray) dose of steroids on Friday. We'll then have a few days before a test that will determine whether or not her body can make its own steroids. She has been taking steroids SINCE BIRTH, so her adrenal system has never had to work for it. If it doesn't make sufficient steroids, she'll have to take a different kind of steroid to help jump start her system. But wouldn't it be amazing, exciting, fantastic, MIRACULOUS if she didn't have to have any help? Yes. Yes, it would. Please pray that her body will work like it is intended to! Once she gets over the steroid hurdles, we can begin the biweekly chemo. That will be amazing for so many reasons!
Also, we'll be starting the process of getting TN Early Intervention involved. They'll help us to identify and work on any areas of developmental delay. I'm actually excited to get started. We don't think she's terribly behind (maybe not at all in some areas), but she has missed some weeks of life with hospital visits, surgeries and so on. :) I just like the idea of having a plan!
And finally, while she IS eating less each time, Aida is still eating every 3-4 hours. Sigh. Tired. In general. Tired of being tired. Tired of whining about being tired. Going to sleep now while I can. Zzzzzzzzzzz. Oh, and of course thank you for continuing to pray for total healing, peace, rest, financial provision, wisdom...Did I mention I was.....Zzzzzzzzzzz.....
Aida seems to be feeling like her old self - good days and bad. Mostly good-ish. All that should improve as well as we finish steroids and are able to stretch chemo to every other week. So here's your chance to pray for a miracle that will amaze the doctors. Aida will have her last (we pray) dose of steroids on Friday. We'll then have a few days before a test that will determine whether or not her body can make its own steroids. She has been taking steroids SINCE BIRTH, so her adrenal system has never had to work for it. If it doesn't make sufficient steroids, she'll have to take a different kind of steroid to help jump start her system. But wouldn't it be amazing, exciting, fantastic, MIRACULOUS if she didn't have to have any help? Yes. Yes, it would. Please pray that her body will work like it is intended to! Once she gets over the steroid hurdles, we can begin the biweekly chemo. That will be amazing for so many reasons!
Also, we'll be starting the process of getting TN Early Intervention involved. They'll help us to identify and work on any areas of developmental delay. I'm actually excited to get started. We don't think she's terribly behind (maybe not at all in some areas), but she has missed some weeks of life with hospital visits, surgeries and so on. :) I just like the idea of having a plan!
And finally, while she IS eating less each time, Aida is still eating every 3-4 hours. Sigh. Tired. In general. Tired of being tired. Tired of whining about being tired. Going to sleep now while I can. Zzzzzzzzzzz. Oh, and of course thank you for continuing to pray for total healing, peace, rest, financial provision, wisdom...Did I mention I was.....Zzzzzzzzzzz.....
Tuesday, July 3, 2012
Just Plain Good News!
We arrived in Cincinnati Sunday evening after a generally uneventful ride. Thankfully, Aida travels well. We were up early Monday with her and out the door to see our doctor at 830. I'm not sure what one level below giddy is, but the doctor was whatever that is! She was truly happy to see her and was pleased with how good she looked and so on. They checked her out, drew some labs to be sure she wouldn't need any products before surgery then sent us to check in. Of course, she couldn't eat for a really long time, so from about 9am she was either crying or (mercifully) sleeping.
The surgeon, already behind schedule, came by to see her and to check out the lesion under her arm that had grown so much since they'd seen her. The plan was only to remove the one behind the head, but after seeing her, the surgeon wanted to take the other. Back at Vanderbilt when she almost had surgery before, there was concern about later some physical development as it was growing out and over towards her chest. The surgeon here didn't expect that to be a problem and, in fact, was quite concerned about the use of her arm if we left it. We didn't think it had been impaired so far, but the lesion seemed to still be growing. I had told Mark that morning that I thought it was growing every day. By the way, in recent weeks as this one grew substantially, the rest of the lesions seemed to remain pretty much the same. Score one for the unpredictability of these lesions. Anyway, in addition to issues with the arm, the doctor was concerned that continued growth would cause the damage to breast tissue we were originally concerned about.
Part of the reason this surgeon felt so good about the surgery was that she'd done the biopsies 2 months before. Those lesions hadn't been entangled in nerves and whatnot, and she thought these felt the same, albeit much larger. Sounds like an easy choice up to here. We'd likely be avoiding developmental issues and hopefully further surgeries (reconstructive) at the cost of a scar. Unfortunately, there were the risks if the surgeon's expectations were not reality. We'd probably be risking damage to breast tissue either way so that was a wash. However, if the lesion WAS entangled, there could be nerve damage - potentially making a mess of her arm, hand and fingers. We had only a few minutes to talk and pray about it.
As I write this now it sounds easy. The truth is, Mark was fine, but I was envisioning all the possibilities. In the end, we decide to do it...and we are thrilled. There was no breast tissue involved and nerves weren't entangled. The surgeon did see a nerve that had been stretched by the growing mass. There's no way to know now what, if any, damage may have been caused...but if it had continued to grow it would have been worse. It's my understanding that the nerve will shrink back to size. There could be some muscle weakness or numbness or something else or nothing at all. :) Again, only time will tell. Also, it turns out that her arm movement WAS being impeded. We just didn't realize until she start playing after surgery. I just thought she favored her right arm and would be right handed. Ha! Her head movement has improved already as well. She definitely has pain - especially since it's impossible to move her without aggravating one of the wounds. Pain meds make it manageable, and she is otherwise very much herself...just a little lighter and more mobile!
And today we received MORE good news. First, we get to go home early tomorrow morning - yay! Second, her numbers are really good...improving even. Third - I know! There's more! - the bone lesions are stable and don't appear to be causing any damage. And finally...the giant, scary liver lesion is a tiny bit smaller. Not tons - but smaller. Our doctor said she wanted to jump up and down but didn't. :) As always, there are still unknowns so even with good news, we all tend to keep one foot on the ground...apparently figuratively AND literally.
In other news, my maternity leave ended Monday, and I am now officially unemployed! So that's that! The only bad news for the week was that the cell phone I'd be assuming (to keep my number) can't be upgraded for almost a year! I've been mourning the loss of an iPhone I didn't even have yet. In the scheme of things, it's a small disappointment. Apologies if this update is a little jumbled or random. We're pretty exhausted, but I couldn't wait to share the good news with everyone! And on that note, I'm off to start packing for home. Woohoo!
The surgeon, already behind schedule, came by to see her and to check out the lesion under her arm that had grown so much since they'd seen her. The plan was only to remove the one behind the head, but after seeing her, the surgeon wanted to take the other. Back at Vanderbilt when she almost had surgery before, there was concern about later some physical development as it was growing out and over towards her chest. The surgeon here didn't expect that to be a problem and, in fact, was quite concerned about the use of her arm if we left it. We didn't think it had been impaired so far, but the lesion seemed to still be growing. I had told Mark that morning that I thought it was growing every day. By the way, in recent weeks as this one grew substantially, the rest of the lesions seemed to remain pretty much the same. Score one for the unpredictability of these lesions. Anyway, in addition to issues with the arm, the doctor was concerned that continued growth would cause the damage to breast tissue we were originally concerned about.
Part of the reason this surgeon felt so good about the surgery was that she'd done the biopsies 2 months before. Those lesions hadn't been entangled in nerves and whatnot, and she thought these felt the same, albeit much larger. Sounds like an easy choice up to here. We'd likely be avoiding developmental issues and hopefully further surgeries (reconstructive) at the cost of a scar. Unfortunately, there were the risks if the surgeon's expectations were not reality. We'd probably be risking damage to breast tissue either way so that was a wash. However, if the lesion WAS entangled, there could be nerve damage - potentially making a mess of her arm, hand and fingers. We had only a few minutes to talk and pray about it.
As I write this now it sounds easy. The truth is, Mark was fine, but I was envisioning all the possibilities. In the end, we decide to do it...and we are thrilled. There was no breast tissue involved and nerves weren't entangled. The surgeon did see a nerve that had been stretched by the growing mass. There's no way to know now what, if any, damage may have been caused...but if it had continued to grow it would have been worse. It's my understanding that the nerve will shrink back to size. There could be some muscle weakness or numbness or something else or nothing at all. :) Again, only time will tell. Also, it turns out that her arm movement WAS being impeded. We just didn't realize until she start playing after surgery. I just thought she favored her right arm and would be right handed. Ha! Her head movement has improved already as well. She definitely has pain - especially since it's impossible to move her without aggravating one of the wounds. Pain meds make it manageable, and she is otherwise very much herself...just a little lighter and more mobile!
And today we received MORE good news. First, we get to go home early tomorrow morning - yay! Second, her numbers are really good...improving even. Third - I know! There's more! - the bone lesions are stable and don't appear to be causing any damage. And finally...the giant, scary liver lesion is a tiny bit smaller. Not tons - but smaller. Our doctor said she wanted to jump up and down but didn't. :) As always, there are still unknowns so even with good news, we all tend to keep one foot on the ground...apparently figuratively AND literally.
In other news, my maternity leave ended Monday, and I am now officially unemployed! So that's that! The only bad news for the week was that the cell phone I'd be assuming (to keep my number) can't be upgraded for almost a year! I've been mourning the loss of an iPhone I didn't even have yet. In the scheme of things, it's a small disappointment. Apologies if this update is a little jumbled or random. We're pretty exhausted, but I couldn't wait to share the good news with everyone! And on that note, I'm off to start packing for home. Woohoo!
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