Another good clinical day for Aida yesterday! She'd gone three days w/o transfusions and her numbers were up again...a lot. Platelets are actually in NORMAL range and fibrinogen is just BARELY under - a HUGE jump there. No transfusions again, and we don't go back until Friday!!! Not out of the woods yet by any stretch, but we're encouraged! And it is SO nice just being at home!
Among the many other things, please be praying that she can avoid infection and that the side effects of all these drugs would ease. Thank you for your continued prayers!
Wednesday, May 30, 2012
Monday, May 28, 2012
Break Time! (more or less)
We're moving...well, not really. I've been procrastinating (surprise), but we are now set up on a website for all things Aida. I'll continue to post updates on Facebook, but the site will allow you to sign up for email alerts when I've posted. There are a few other features we're excited about as well, so please visit us there... www.AidaRebecca.blogspot.com
It was a fairly good week last week by all accounts. On Wednesday, Aida's numbers had "jumped" a little, so we got a day off from clinic (2 days without transfusions). When we returned on Friday, her platelets had actually increased a tiny bit. Her fibrinogen (always the most challenging) had dropped but was still higher than it had been being when she was getting product every day. And all this after 2 days off! (Just a note - good numbers for Aida are still below "normal.") So they "tanked her up" on Friday for the long weekend. It is sooooo wonderful to be at home instead of clinic. I'm a tiny bit nervous about her counts when we go back but definitely hopeful. She hasn't gone 3 days without getting blood products in over a month. Regardless, the break from clinic has been phenomenal. Meanwhile, all of my immediate family (and spouses) were up at one point or another during the last week...even my then 6 week old nephew! He's so adorably small that our steroid baby (who is only 5 weeks older) makes him look - and FEEL - like a toy. :) Everyone wasn't here all at the same time, but it felt a lot like Christmas - presents and all! :)
We've met with surgeons here who want to do surgery to remove a couple of the large lesions outside her body. We all definitely want the biggest (outer) one removed as it has begun to impede her head movement some. Still, we're not sure if this is surgery we'd do here or in Cincinnati - or when. The doctors here want to do it soon, but we're discussing with the doctor in Cincinnati what the plan might/should be. Her steroid dose has been reduced a little because the side effects become riskier the longer she's on it (approaching 3 months.) It's a necessary and inevitable change, but I'm a little nervous though since in the past it seems to be the only thing to have a significant effect. We're praying that the chemo has begun to work, and that is the reason for improvement in her numbers...or just plain healing, of course. If not, if the steroids are the only thing helping, we'll be in for more tests and possibly surgeries. In the meantime, we're more or less holed up except for visits to the clinic since the risk of infection for her is high. Sorry to all our local friends...we've become even LESS accessible. We love and miss you all!
I forgot to mention last time around that the MRI showed that she has lesions in her bones as well...further stumping the doctors. They've seen it before - sort of - but not like hers. Feels like a broken record. If tapering the steroid leads to growth, they'll likely biopsy one of these in the bones, which is apparently fairly simple - or possibly the liver. The doctors here and in Cincy aren't 100% in agreement all the time, so that is a little frustrating. Understandable but frustrating. In other big-ish news, transplant surgeons in Cincinnati have said they can do surgery to remove the tumor if need be. (We're NOT talking about a transplant - just some extra skilled surgeons.) Again, if things don't continue to improve, this may be part of the conversation again as well...not somewhere I'd like to go.
And on the home front, we are in for some new adventures. It turns out, TN allows for 4 months maternity leave - meaning I have through July 1st. Such a blessing! I'd been told this before she was born but hadn't really thought about it since I didn't expect to need it! Of course, this is not paid time, but it does give us a little more time with benefits...most notably insurance. Please be praying with us about the financial challenges we're about to experience - opportunities for us all to see God's grace for sure! We have been very blessed up to now and are doing our best to trust God to provide the manna we need every day. As Mark likes to remind, God will be glorified in all this because there is NO WAY we could do this on our own. In the end, taking care of our little girl is all we're concerned about. I believe that He gave her to us for a reason, and He will provide for her care (and ours). She has good days and bad and some in between, but the little windows of coos and grins and laughs sure make it all a little easier. :) I just want to eat her up! I can't tell you how thankful I am that God chose us.
One last note...several people have commented that all the smiley pics make it hard to believe she's enduring what she is. To be sure, we count it as a blessing that her beautiful face does not reflect the craziness that is in and on her body. Besides, healthy or not, I imagine most parents only share the "cute" pics anyway. :) But those who have had the opportunity to meet her can easily see what you cannot. Occasionally, there is a little something in a photo if you're looking, but the happy (and often strategically edited) photos are entirely intentional. I'll probably change my mind someday, but for now, I want all of you to focus on what we are believing for...a happy, HEALTHY Aida.
It was a fairly good week last week by all accounts. On Wednesday, Aida's numbers had "jumped" a little, so we got a day off from clinic (2 days without transfusions). When we returned on Friday, her platelets had actually increased a tiny bit. Her fibrinogen (always the most challenging) had dropped but was still higher than it had been being when she was getting product every day. And all this after 2 days off! (Just a note - good numbers for Aida are still below "normal.") So they "tanked her up" on Friday for the long weekend. It is sooooo wonderful to be at home instead of clinic. I'm a tiny bit nervous about her counts when we go back but definitely hopeful. She hasn't gone 3 days without getting blood products in over a month. Regardless, the break from clinic has been phenomenal. Meanwhile, all of my immediate family (and spouses) were up at one point or another during the last week...even my then 6 week old nephew! He's so adorably small that our steroid baby (who is only 5 weeks older) makes him look - and FEEL - like a toy. :) Everyone wasn't here all at the same time, but it felt a lot like Christmas - presents and all! :)
We've met with surgeons here who want to do surgery to remove a couple of the large lesions outside her body. We all definitely want the biggest (outer) one removed as it has begun to impede her head movement some. Still, we're not sure if this is surgery we'd do here or in Cincinnati - or when. The doctors here want to do it soon, but we're discussing with the doctor in Cincinnati what the plan might/should be. Her steroid dose has been reduced a little because the side effects become riskier the longer she's on it (approaching 3 months.) It's a necessary and inevitable change, but I'm a little nervous though since in the past it seems to be the only thing to have a significant effect. We're praying that the chemo has begun to work, and that is the reason for improvement in her numbers...or just plain healing, of course. If not, if the steroids are the only thing helping, we'll be in for more tests and possibly surgeries. In the meantime, we're more or less holed up except for visits to the clinic since the risk of infection for her is high. Sorry to all our local friends...we've become even LESS accessible. We love and miss you all!
I forgot to mention last time around that the MRI showed that she has lesions in her bones as well...further stumping the doctors. They've seen it before - sort of - but not like hers. Feels like a broken record. If tapering the steroid leads to growth, they'll likely biopsy one of these in the bones, which is apparently fairly simple - or possibly the liver. The doctors here and in Cincy aren't 100% in agreement all the time, so that is a little frustrating. Understandable but frustrating. In other big-ish news, transplant surgeons in Cincinnati have said they can do surgery to remove the tumor if need be. (We're NOT talking about a transplant - just some extra skilled surgeons.) Again, if things don't continue to improve, this may be part of the conversation again as well...not somewhere I'd like to go.
And on the home front, we are in for some new adventures. It turns out, TN allows for 4 months maternity leave - meaning I have through July 1st. Such a blessing! I'd been told this before she was born but hadn't really thought about it since I didn't expect to need it! Of course, this is not paid time, but it does give us a little more time with benefits...most notably insurance. Please be praying with us about the financial challenges we're about to experience - opportunities for us all to see God's grace for sure! We have been very blessed up to now and are doing our best to trust God to provide the manna we need every day. As Mark likes to remind, God will be glorified in all this because there is NO WAY we could do this on our own. In the end, taking care of our little girl is all we're concerned about. I believe that He gave her to us for a reason, and He will provide for her care (and ours). She has good days and bad and some in between, but the little windows of coos and grins and laughs sure make it all a little easier. :) I just want to eat her up! I can't tell you how thankful I am that God chose us.
One last note...several people have commented that all the smiley pics make it hard to believe she's enduring what she is. To be sure, we count it as a blessing that her beautiful face does not reflect the craziness that is in and on her body. Besides, healthy or not, I imagine most parents only share the "cute" pics anyway. :) But those who have had the opportunity to meet her can easily see what you cannot. Occasionally, there is a little something in a photo if you're looking, but the happy (and often strategically edited) photos are entirely intentional. I'll probably change my mind someday, but for now, I want all of you to focus on what we are believing for...a happy, HEALTHY Aida.
Saturday, May 19, 2012
Update - FINALLY!!!
It's been a while since our last update. Sorry about that. We have had a couple of back and forth, up and down weeks. Every time we thought we knew something, we were waiting on some detail which would ultimately change everything. All the updates would have just been confusing. At any rate, here we are again...
After coming home from Cincy 2 weeks ago, Aida had a tough week. We went to the clinic every day except Saturday for transfusions. On top of that she was having some pretty rough & scary side effects (presumably from the chemo drug.) Worse, there was some sudden growth of several lesions. So on Saturday night (before Mother's Day), I emailed the doctor in Cincy to give her an update. She called me the next day (Mother's Day), and things got hairy after that. The timeline we'd been planning on was accelerated. The MRI that was planned for a month out came Tuesday. Our expectation was that this would be used to prep for surgery on her liver. Instead, we got the news that night that surgery wasn't an option. I believe the doctor said "she wouldn't make it off the table." Half her liver is covered by a tumor, and the other half looks like a marbled steak - too many small hemangiomas to count. On the up side, Mark and I don't have to make a decision about a surgery that could be very high risk. On the down side, they really have no idea what to do.
The conversation that night was a scary one - that I had been awakened from a nap to hear...by myself. The doctors were using words like we'd heard in a conversation once before...catastrophic, devastating, life threatening. I held it together until Mark got to the hospital then had a mini breakdown. In reality, the day to day concern is the same as it has always been. Only now, it is more intense because she is needing transfusions more and more. If the numbers get too low, she risks bleeding - most importantly - into her brain. Cue scary words. We were able to talk to the Cincy doctor (the expert) late that night, and she calmed our nerves a little bit. As long as we can keep her numbers up - which so far we basically have - the risk of bleeding is lower. The concern is that the tumors will continue to grow, consuming more and more until we end up living in the hospital for multiple transfusions each day...and then who knows what.
The liver is believed to be the biggest problem, so having that option taken off the table makes things even more complicated. There are several pretty large ones outside the body that are much less risky to take - similar to the biopsies she had before. I personally believe this would help, but nobody really knows. I expect we will do that before too long, in part because the one on the back of her head is beginning to get in her way. They are now "throwing everything at her". This means they have added an immunosuppressant drug which carries some significant risks. Primarily they are concerned about infection because in addition to this drug she is taking what Mom calls a super dose of steroids - more than triple what she had before. Among other preventative measures, we've been told not to take her out - except to the clinic, of course.
We'll be spending quality time at the hospital tomorrow like we did today, but today we had a bit of GOOD news. Her numbers were higher than usual today - much higher. She's still nowhere near normal, but she is above the threshold they want for the first time in WEEKS. We told the nurse it was a miracle. No really, a miracle. She said she believed in miracles. :). Mark texted our doctor in Cincy to let her know, and she said we made her day. All that said, we are still intent on taking it all a day at a time. Her numbers could drop again tomorrow, but for today...we're celebrating.
Thanks for continued prayers for all of us. We feel the support every day!
After coming home from Cincy 2 weeks ago, Aida had a tough week. We went to the clinic every day except Saturday for transfusions. On top of that she was having some pretty rough & scary side effects (presumably from the chemo drug.) Worse, there was some sudden growth of several lesions. So on Saturday night (before Mother's Day), I emailed the doctor in Cincy to give her an update. She called me the next day (Mother's Day), and things got hairy after that. The timeline we'd been planning on was accelerated. The MRI that was planned for a month out came Tuesday. Our expectation was that this would be used to prep for surgery on her liver. Instead, we got the news that night that surgery wasn't an option. I believe the doctor said "she wouldn't make it off the table." Half her liver is covered by a tumor, and the other half looks like a marbled steak - too many small hemangiomas to count. On the up side, Mark and I don't have to make a decision about a surgery that could be very high risk. On the down side, they really have no idea what to do.
The conversation that night was a scary one - that I had been awakened from a nap to hear...by myself. The doctors were using words like we'd heard in a conversation once before...catastrophic, devastating, life threatening. I held it together until Mark got to the hospital then had a mini breakdown. In reality, the day to day concern is the same as it has always been. Only now, it is more intense because she is needing transfusions more and more. If the numbers get too low, she risks bleeding - most importantly - into her brain. Cue scary words. We were able to talk to the Cincy doctor (the expert) late that night, and she calmed our nerves a little bit. As long as we can keep her numbers up - which so far we basically have - the risk of bleeding is lower. The concern is that the tumors will continue to grow, consuming more and more until we end up living in the hospital for multiple transfusions each day...and then who knows what.
The liver is believed to be the biggest problem, so having that option taken off the table makes things even more complicated. There are several pretty large ones outside the body that are much less risky to take - similar to the biopsies she had before. I personally believe this would help, but nobody really knows. I expect we will do that before too long, in part because the one on the back of her head is beginning to get in her way. They are now "throwing everything at her". This means they have added an immunosuppressant drug which carries some significant risks. Primarily they are concerned about infection because in addition to this drug she is taking what Mom calls a super dose of steroids - more than triple what she had before. Among other preventative measures, we've been told not to take her out - except to the clinic, of course.
We'll be spending quality time at the hospital tomorrow like we did today, but today we had a bit of GOOD news. Her numbers were higher than usual today - much higher. She's still nowhere near normal, but she is above the threshold they want for the first time in WEEKS. We told the nurse it was a miracle. No really, a miracle. She said she believed in miracles. :). Mark texted our doctor in Cincy to let her know, and she said we made her day. All that said, we are still intent on taking it all a day at a time. Her numbers could drop again tomorrow, but for today...we're celebrating.
Thanks for continued prayers for all of us. We feel the support every day!
Monday, May 7, 2012
Aida's Latest
The doctors in Cincy believe Aida has what are called congenital hemangiomas which are pretty rare. Even more rare is multiple congenital hemangiomas. For babies that do have these types of lesions, they are frequently in the liver (if inside) but almost never in the brain. There are 2 types of congenital hemangiomas - ones that "go away" rapidly (in about a year) and ones that never go away. She has indicators for both, but we're told she shows more signs of those that do go away.That said, almost nothing about her case fits a textbook description, so it is impossible to know right now. These lesions are typically fully grown at birth and often even beginning their decline in utero. Aida's are growing. We can only wait it out to see if they begin to shrink on their own which could take months.
In the mean time, she can't wait to be treated. She is having to have infusions nearly every day which is a little out of control. There is always risk of spontaneous bleeding - which on the brain could be "devastating," and the larger these lesions become, the more of her blood products they trap. So for now, she has been started on the chemo drug that had been discussed before, but no one knows if it will work as there are currently no proven treatments for congenital hemangiomas. (The beta blocker dose has also been doubled.). We'll be going to the clinic at Vandy for labs and infusions 3+ times a week to keep it all in check. In 2 weeks, she will have a follow up ultrasound to monitor growth of the lesions on her brain and liver.
The lesion on the liver is pretty massive. It covers half her liver already. If the medicines don't work to improve the situation (or it doesn't show signs of resolving on its own), they will do surgery to remove half of her liver. The "good" news is that the liver regenerates, so there'd be no long term effects from that. Unfortunately, surgery for Aida is very risky, so obviously we'd rather not go down that road. The small biopsies of lesions outside her body were a big enough ordeal already. For now, her liver function is still good, and removing just a portion is an option. The window for that solution, however, is limited. If it progresses much further on the liver, we'd be talking transplant instead which nobody wants. So! We are praying that the meds prove effective quickly...or better yet that God would just heal her altogether!!! Assuming nothing happens before, we'll return to Cincy in a month for a (sedated) MRI so they will have the info they need if they end up doing surgery.
On a few positive notes, they were able to give her an antibiotic that is administered monthly (at the hospital) that won't bother her stomach. That is a big relief! She's continuing to gain weight well, though it's not a huge surprise since she's on steroids. :). 10 lbs 14oz today! Mark said he's gonna start carrying her in a backpack. :) Also, as they continue to address what can be pretty severe anemia, Aida feels much better most days which helps us feel a little more normal.
Thank you all for continued prayers and support. It is appreciated more than you know!
In the mean time, she can't wait to be treated. She is having to have infusions nearly every day which is a little out of control. There is always risk of spontaneous bleeding - which on the brain could be "devastating," and the larger these lesions become, the more of her blood products they trap. So for now, she has been started on the chemo drug that had been discussed before, but no one knows if it will work as there are currently no proven treatments for congenital hemangiomas. (The beta blocker dose has also been doubled.). We'll be going to the clinic at Vandy for labs and infusions 3+ times a week to keep it all in check. In 2 weeks, she will have a follow up ultrasound to monitor growth of the lesions on her brain and liver.
The lesion on the liver is pretty massive. It covers half her liver already. If the medicines don't work to improve the situation (or it doesn't show signs of resolving on its own), they will do surgery to remove half of her liver. The "good" news is that the liver regenerates, so there'd be no long term effects from that. Unfortunately, surgery for Aida is very risky, so obviously we'd rather not go down that road. The small biopsies of lesions outside her body were a big enough ordeal already. For now, her liver function is still good, and removing just a portion is an option. The window for that solution, however, is limited. If it progresses much further on the liver, we'd be talking transplant instead which nobody wants. So! We are praying that the meds prove effective quickly...or better yet that God would just heal her altogether!!! Assuming nothing happens before, we'll return to Cincy in a month for a (sedated) MRI so they will have the info they need if they end up doing surgery.
On a few positive notes, they were able to give her an antibiotic that is administered monthly (at the hospital) that won't bother her stomach. That is a big relief! She's continuing to gain weight well, though it's not a huge surprise since she's on steroids. :). 10 lbs 14oz today! Mark said he's gonna start carrying her in a backpack. :) Also, as they continue to address what can be pretty severe anemia, Aida feels much better most days which helps us feel a little more normal.
Thank you all for continued prayers and support. It is appreciated more than you know!
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