New Beginnings

So we're home from Cincy...for a minute. We had our appointment with the doctor on Wednesday morning and into the afternoon which was great. We were given all kinds of information about tumors, malformations, hemagiomas and more, and she was poked and prodded by a half dozen people. That said, we KNOW less than we did before about Aida's condition. We returned for infusions Thursday and more conversations with doctors - including the team surgeon as she'll be having a real deal biopsy on Tuesday morning. She previously only had a punch biopsy, and it turns out, the results were not exactly definitive. I believe the report said "some evidence of..." or something like that. We are hoping to have a real diagnosis - if one exists - by the end of next week so that new treatments can begin. We've been told it may take 4-5 weeks to determine if new therapies are working, and that feels like a very long time for a baby so unwell.

It is encouraging to know that the team we're dealing with now does this kind of thing all the time - sort of. It appears that many of the lesions don't fit any textbook descriptions - or even anything they've seen before, it seems. Some do, but they would not be causing the problems she's having. They're just bonus. :) Still, the radiologist, pathologist, surgeon and on and on are familiar with this area of vascular whatever-it-is. To date, we've not seen any of the imaging of all the mess inside, but this doctor wants us to. THAT is scary. I wanted to keep it all in a box or something so in 10 years we could look back, show Aida and appreciate it all. We shall see.

We were given the option to come home - and to Vandy today - or hang there and be admitted early. We opted to come home to regroup before a long week - partly inpatient, partly outpatient. The doctor is very "concerned"...a medical term that I've come to believe means "not in imminent danger, but really not good at all," so she's taking very good care of us. We will most likely return on Sunday night since it seems her numbers are good enough to hold through the weekend. She will definitely be admitted on Monday for some pre-surgery (biopsy) stuff, but the doctor will admit her whenever we want to come. We're not exactly sure of our plan - whether Mark will go the whole week or only part and how I'll get there if by myself. So basically, we are in good hands, starting over in some ways, and in for some more "adventure." Aida has been feeling pretty well lately, so that makes life in general more fun. What a blessing!

The doctors and nurses keep telling us what a great job we're doing and that we seem to have it together and things like that. And the truth is, even though I don't always get a shower, and I have the occasional, good, cleansing cry, I feel like we sort of do have it "together" (whatever that means) much of the time. It would be inexplicable except we know that so many people that we do and don't know - I like to believe thousands - are praying for us all the time. I imagine with so many prayers and pray-ers, God is hearing from someone all day long. We know that those prayers are why we are able to deal as well as we are. Don't get me wrong. It is all very scary, and we are incredibly "concerned" :) but God's hand has been all over this from the start. In addition to countless prayers, we have been beyond blessed by family, friends, co-workers and near-strangers with encouragement, financial support, acts of service and more. It is all terribly humbling.

I know I don't even have to ask for continued prayers, so I'll just say this. Beyond the obvious - all things Aida - we would greatly appreciate prayers for wisdom in making decisions about short term things like how much of this week Mark can/should/needs to be in Cincy versus work...and long term things like what life is going to look like when my maternity leave ends in 4 weeks. Also, please pray about the things that every parent faces...maintaining a good relationship with each other, good communication, lack of sleep, etc...all the delightfully boring, normal stuff.

We love you all and will update soon

I Hear It's Nice In Cincinnati This Time Of Year...

Well, I don't know if it's nice there or not, but we're gonna find out!

Our plans have been pretty seriously altered today, and a trip to Cincinnati is in our near future. After very low numbers on Tuesday followed by infusions, Aida's numbers were very low again today. We'd expected a "quick" lab visit today, but we stayed for an infusion. We're going back tomorrow and will most likely spend the weekend in the hospital so they can monitor her and administer infusions since the numbers are dropping so quickly and severely.

The specialist our doctors have been consulting with is at the Cincinnati Children's Hospital where we will be going next week - probably Tuesday or Wednesday. We'll be seeing this specialist at the Vascular Malformation Center there - which is what she has all over her body, inside and out. If there's a place to go for what she has, this is it. Instead of the chemo treatment we'd been prepped for, we may be looking at a clinical trial. We've been told to prepare to stay for 5-7 days, but it may be less than that. Once the appointment is set, we'll look into lodging at the Ronald McDonald house. We are hoping and expecting the treatment will still be administered at Vanderbilt, so we wouldn't be running back and forth to Cincinnati.

Until next time...

The Latest On Aida - A Tough Reality

Sitting in the infusion room as I write today. Aida was given platelets for the first time since she was born, and we're waiting (for almost an hour now) for the cryo infusion (for low fibrinogen). Mom and Dad have been here since Sunday night, but Dad has left this afternoon. They've been a huge help because "crazy" Aida has made an appearance again. There are several possible reasons - one of which is that she was feeling AWFUL from antibiotic over the weekend. As it turns out, someone somewhere made a mistake with the dose - 8 times what she should have had. She was so sick from it that we skipped the last of four doses. Thank goodness!

I jokingly told Mom that the good news is we live so close to Vanderbilt and the bad news is everything else. That's a little dramatic, but the news today really wasn't great. We are now heading down the scarier path we were hoping to avoid. One positive note is that one of our doctors is an authority of sorts and is friends with a (the) national specialist for Kasabach-Merritt Syndrome which is what they are now treating her for. (She still has infantile hemangiomas outside, but they now believe the large ones inside are a different, more aggressive, more rare type.) Our doctors are consulting with this top specialist because the treatments they have been using are not working. The numbers continue to drop quickly after infusions, which may indicate growth of the hemangiomas on her liver and brain. There has definitely been more growth on the ones on the outside, so the former seems likely. Either way, she's not better. She's worse.

So! Pending confirmation of the plan from the national specialist, the plan is to start her on a form of chemotherapy soon. We're told it is a milder drug with fewer side effects, but we won't know until we get there! We're going back to the clinic on Thursday for labs. We're not sure when we'll start the new plan, but we expect it to be very soon. In the mean time, we are hoping sweet, smiling Aida will return soon. It's physically and emotionally exhausting -and just plain sad - to watch her be so uncomfortable and not be able to do anything! We'll update as soon as we have news.

Your prayers are so very appreciated!

Happy 6 Weeks to Aida - One Super Tough Baby

Quick update...

There is no treatment change yet, but I think next week may bring the reevaluation. Indicators were not great earlier this week though as her fibrinogen was low and required an infusion - but there's still time! She also received red blood cells which among other things are helping her crazy irritability. Who knew low iron could make her scream bloody murder endlessly? Anyway, she's been given new medicine for her stomach to counter the trouble caused by the steroids as well as antibiotic to protect against infection. There are still some tummy troubles, but all in all, she's a much happier baby!

Her platelets were also low-ish on Tuesday, but they didn't want to do 3 infusions in one day, so we went back Thursday to have that checked. Honestly, there really wasn't time to do more infusing than we did. We shut the place down (6 hours at the clinic that day!). :) Just as well though since her platelets were up a bit on their own, so no infusion. Woohoo! I told Mark we'd been "in and out" then realized we'd been there 1.5 hrs. It's all about perspective!

We go back Tuesday for more of the same. We're hoping that the numbers will be improving with the continued use of the steroid. It'd be really great not to get an infusion at all! And I'm sure that would be a great encouragement to her doctors as well to keep on this course.

Thanks for continued prayers from family, friends and those who don't even know us! We couldn't do it without you! Love to all!

2 Steps Forward, 1 Kind-Of-Scary Step Back

Since the last post we've been to the Doctor twice, so I'll back up to last Tuesday. The MRI results were generally good. The large hemangioma on the brain shrunk, but the one on the liver (biggest) stayed the same. (This is the opposite of what we'd seen before.) Her fibrinogen was low, however, so we had to stick around forever to get a transfusion. It had been 2weeks since the last one though, so it wasn't a HUGE deal. Still, there was discussion about increasing the newer med since we had tapered off the steroid which had been being effective. That brings us to this past Tuesday...

Fibrinogen levels were low again which was disappointing but not terribly surprising. Since quitting the steroid, we'd noticed that one of the hemangiomas had visibly grown significantly so we knew something was off. These changes meant a couple of things for us right away. First, we had to go back for another transfusion today, which from leaving the house to getting home takes half the day. Second, we have restarted the steroid. They don't seem to be concerned about side effects of continuing this for a while longer.

All of this is significant because it appears that some of the hemangiomas may be responding to the beta blocker and others not. Early on there had been discussion of another syndrome because of the initial presentation. Once the biopsy came back, however, it was diagnosed as infantile hemangiomas - a really unusual presentation but encouraging to all because of the prognosis. Now that we're seeing the different responses (or lack thereof), they believe that she may actually have BOTH. We can't really know for sure because they'd have to biopsy one from the liver, and that's not going to happen. It feels a little like we're in an episode of House...basically a little bit of trial and error.

For right now, we are praying that the steroids make a noticeable difference in her fibrinogen levels - and quickly. If it doesn't stabilize, we'll be looking at other, scarier, more involved treatment options. The new "diagnosis" in itself is pretty intense as it is.

Please be praying...
*for the steroids to be effective...or better yet, miraculous improvement across the board
*that we can take this all one day at a time - its easy to get ahead of ourselves with worry about the unknowns as well as the knowns (maternity leave ends in 7 weeks, for example)
*peace and rest so we can do all the normal new baby stuff!

On a more positive/normal note, Aida IS doing all the normal baby stuff - eating, pooping, inexplicably screaming from time to time, and being all around adorable. She has been gaining weight well and may very well pick up the pace with the steroids. :) Eating isn't always super easy because she has some tummy troubles, we think, from the meds. When her day isn't totally screwed by hospital hoo-ha, we have a decent routine, but it doesn't involve tons of sleep for me! Either way, she has some serious bouts fussiness at times. I can usually handle it when it happens at 7pm. When she's awake crying and hollering from 3-5a, it's a little tougher. :) We're learning her and getting better at calming, but it's usually a workout. Our current best friend is a small, battery operated, travel white noise machine. :) It helps a little to remember that today she should only be 4days old! Instead, today we mark 5weeks.

Thanks to all for continued prayers, support, meals, gifts, patience, etc. We appreciate it more than you know. Love to all...