Blog

No More Tubies!!

I can’t even begin to tell you how happy I am that Audrey FINALLY got her tubies removed. Audrey has had a double lumen Broviac central venous catheter aka “tubies” for the last year and a half. We covered them for every bath so they didn’t get wet, we had to constantly tape them to her sensitive little skin so they wouldn’t hang down and we were forever worrying if they were going to accidentally fall in the potty, get pulled on, get chewed on by the dog, etc. Tubies delivered medications, made blood draws a piece of cake, they were used for blood transfusions and they were the means in which Audrey received her bone marrow transplant BUT…good riddance!

Right before the procedure Audrey got a little nervous and said “I not want to take tubies out” but after we reminded her that she could now go swimming in the pool, take real baths with splashing and she wouldn’t have to have weekly dressing and cap changes, she quickly changed her mind!

Only one parent was allowed to walk Audrey back to the OR so Mommy did it. Holy crap, it’s been a long time since I’ve had to do something like that…I forgot how much I hate it! They gave her some gas to put her to sleep (not sure they’ve ever done that before) and it took 4 of us to keep her calm/held down before she finally passed out. The procedure was quick and easy. She only received one stitch and the bandage is already off and she’s cleared to do whatever she wants! Bring on the Summertime fun!


Team Audrey had SUCH a good time at this year’s Histio Hike in the Shenandoah Mountains. We were able to raise the most money and had the biggest team in attendance….36 members! We met some really great Histio families and, while we knew it all along, it was nice to know we aren’t alone and that there are (fortunately and unfortunately) families out there just like us. Audrey got to meet the one other HLH survivor in attendance (a registered nurse from Charlottesville named Stephanie) and it was seriously love at first sight…the two of them had an instant bond that I know will last a lifetime. Looking forward to many more hikes with all of these amazing people!

We had a great time last week in NYC at the Histio Fundraising Dinner. The event took place at the New York Athletic Club right across the street from Central Park. Audrey was SO well-behaved and did a really great job schmoozing and sweet talking the guests so they would make some donations to the Association. And I managed to give my entire speech without crying which is quite impressive if I do say so myself!

We have been invited to the Inova Blood Services dinner tomorrow night to tell our story to donors and thank them for all that they do. Hopefully Audrey is as well-behaved tomorrow as she was last week…fingers crossed!

This is it for our “Audrey HLH tour” (as of right now) so we’re hoping to just chill out and relax over the Summer.


There’s not much to report on the IVF stuff right now. The doctor wants me to wait until at least the end of June to discuss implantation as they want my internal bleeding to completely heal up and for my hemoglobin to get back within normal range. I’m pretty bummed about the delay but there’s nothing I can do about it other than continue to wait!

Here’s how our final numbers look though…

27 eggs removed

26 were mature enough to move forward with fertilization

23 eggs fertilized

13 embryos grew to the appropriate size by Day 5 and could be biopsied

Of the 13 that were biopsied: 7 weren’t viable due to chromosomal abnormalities or HLH, 4 are carriers and 2 are non-carriers.

When the time comes and I get the clearance from the doctor, we will implant one of the non-carriers and see how it goes! (For those wondering, they will only implant one at a time!) In the meantime, our 6 little babes are in a freezer waiting for their big debut.


That’s about it! Audrey is now on a once a month schedule with her hematologist. We have joined the local swim club so we’ll hopefully be there a lot this Summer. We’ve been going to the monthly story time at the library, some of the playgroup gatherings and Audrey will begin taking a dance class in July. School starts in August and we’re headed to Disney in September.

Life is good. Life is really good right now.

xoxo

This slideshow requires JavaScript.

Well, That Was Unexpected…

Soooooo, as I mentioned in my last post, we officially started IVF treatment a couple weeks back. I took my fertility meds as instructed, I went to the clinic for LOTS of monitoring appointments, and, once we were told that everything was ready to go, we went in for egg retrieval!

I responded extremely well to the medications so they were able to remove 27 follicles…woohoo! We were told that the procedure went really well, however, I felt REALLY bad. At one point my blood pressure dropped to 70/50 and I almost passed out. But, after some extra fluids and some blood pressure meds (and I puked a couple of times), I started feeling better so we went home.

I tried napping with my girl but just couldn’t get comfortable so I got up and had a little lunch before trying to rest a little more. Adam and Audrey went outside to play so Mommy could rest but all of a sudden I started having sharp shooting pains in my chest and my upper back and I became completely paralyzed…it was insane! I started screaming for Adam and was close to calling 911…I thought I was having a freaking heart attack! Adam helped me up out of bed (pretty sure I scared the shit out of him) and, just as fast as the pain started, the pain went away. I like to think that I have a pretty high pain threshold but this was the WORST thing I have ever felt in my life and I’ve had a c-section and kidney stones three different times!

We, of course, called the doctor and he asked us to go to the ER for bloodwork and an ultrasound but he didn’t seem overly concerned. Well, hours of waiting, 3 failed IV attempts, an extremely bloated belly, a chest x-ray, bloodwork, a CT-scan and a hospital admission later, we were told that I had blood in my abdomen as a result of the morning’s procedure. Sounds like the doctor may have hit a blood vessel during the egg hunt. The excess blood was pooling in my abdomen and, when I would lie down, the blood would push against my diaphragm, which (I just learned) has nerves that connect to your chest and upper back…who knew?!

They did LOTS of bloodwork while I was in the hospital to monitor my hemoglobin levels (Seriously?? Don’t we do enough hemoglobin monitoring with Audrey??). The hemoglobin counts would help them determine whether or not I was still bleeding and, if I was, I was going to need surgery to fix the damage. My hemoglobin got down to 8.7 (transfusion is usually around 7) but my numbers had stabilized which meant the bleeding had most likely stopped. They sent me home and told me to “just wait for things to get better.” The doctor said it usually takes 1-2 weeks before the blood gets reabsorbed into the body and that there’s really nothing you can do to speed it along. They gave me some decent pain medications, some iron supplements, and they said to stay hydrated and “take it easy” (don’t they know that I have a toddler and a puppy?!). Sooooooo, now I wait.

I have to sleep sitting up (so annoying), my tummy is still rock hard but seems to be getting smaller, I am extremely light headed ALL the time and I have had a headache for three days now but anything is better than those shooting pains in my chest and back!!

Here are our numbers so far though!

  • 27 follicles removed
  • 26 were mature enough to proceed with fertilization
  • 23 eggs fertilized
  • And today we received this note…”Ideally by today we like to see embryos be at least 6 or more cells.  Your embryos are at the following stages: 1 at 2 cells, 1 at 3 cells, 2 at 4 cells, 2 at 5 cells, 4 at 6 cells,  4 at 7 cells, 2 at  8 cells, 1 at 9 cells, and 6 are compacted (the next stage of development).  You have a really nice number that are progressing well.  The next update will be either Sunday or Monday.”

So, despite the ER adventure, things are moving in the right direction! We will get one more update and then they will move forward with the PGD. This will take about two weeks so we won’t have final numbers until sometime in May. I have no idea what this is going to do to our overall timeline as I will, obviously, need to completely recover before implantation is scheduled but that’s OK, those frozen little babes aren’t going anywhere!

Audrey continues to do extremely well. Her clinic appointments are every two weeks now and we are really hoping that she’s still on track to get tubies out in May. She’s growing, she continues to get stronger and the toddler-like behaviors continue to shine through on a daily basis! Audrey also has her first dentist appointment next week to check out the spot on her front tooth that started after her chemo treatments. Fingers crossed it is nothing serious!

Always an adventure in the Bryan household!

xoxo

This slideshow requires JavaScript.

IVF, PGD and the ABCs

I wasn’t sure how much I was going to share about our IVF experience but…here it goes!

Audrey’s condition, HLH, is genetic which means both Adam and I are carriers and any child of ours has a 25% chance of having the disease. We can play our odds and see what happens (I mean, really, could one family have THAT much bad luck?!) or we can play it safe and go forward with an IVF cycle…we are choosing the safe route!

IVF alone doesn’t mean that we will have a healthy baby but there is something called preimplantation genetic diagnosis (PGD) that we will be doing in conjunction with IVF. PGD will test our embryos before they are implanted to see if they have HLH, if they are carriers for HLH or if they are free of the disease completely.

https://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis

We started this process months ago as the PGD test can take up to 8-12 weeks to develop. Both Adam and I have gone through extensive bloodwork, exams (for me), sample analysis (for him), a lot of waiting AND…we have been cleared to move forward with a cycle!

Here’s how things will work…

  • I will begin fertility medication this Friday the 7th. These medications will be taken for about two weeks with a lot of bloodwork and monitoring in between.
  • They will remove my eggs (hopefully a whole lot of them) when they are ready and, that same day, they will request a sperm sample from Adam.
  • That afternoon they will fertilize the eggs via ICSI…meaning they will inject the sperm directly into the eggs. (https://en.wikipedia.org/wiki/Intracytoplasmic_sperm_injection)
  • The eggs will marinate for about 5-6 days.
  • The ones that develop into embryos will be screened via PGD for HLH and we will then be told what we have to work with. (We will also be told the genders of our embryos!)
  • All of the healthy embryos (unaffected and/or carriers) will then be frozen until we are ready to move forward with implantation.

Because I’m no spring chicken and I may not produce a ton of eggs to begin with AND because some of the embryos may have HLH, there’s a chance we will need to move forward with an embryo that is an HLH carrier as that might be our only choice…not a big deal (Adam and I are carriers and we’re fine) but we, obviously, would like to stop this disease in its tracks, if possible. Let’s just hope we have a lot to work with and we can find the absolute best blastocyst in the bunch! 🙂

Side note…we chose to be screened for 314 genetic disorders before moving forward, yikes! And while it’s scary to think another child of ours could have a genetic disorder, we were more terrified that this screening could show that Audrey has something that we don’t know about yet. Thankfully (I guess), the only thing that presented itself was cystic fibrosis and Adam is only a carrier (I am not) so we “shouldn’t” have anything to worry about.

Another side note…I was an egg donor after college. Kinda funny coming back to the same place 15 years later looking for help!

Here’s the craziness running through my mind these days…

Are we really ready for another baby right now?? Didn’t we almost just lose the one we have?? Didn’t we just get our family back in order? Didn’t life JUST return to normal?? Isn’t Audrey so completely perfect that one child is plenty?? What would I do without my sister and brother in my life?? Shouldn’t Audrey be given the gift of a best friend for life?? Why should that monster HLH keep us from growing our family like we always wanted?? What kind of big sister will Audrey be?? How will I possibly love another the way I love Audrey?? What will “normal” life be like with a healthy child??

No, we probably aren’t completely ready to grow our family and the bond I have with my daughter is indescribable but I think another child would be so very lucky to be part of this crazy world of ours because, personally, I think we’re pretty awesome. We have SO much love for one another but we still have so much love to give. Plus I think Audrey is going to be an amazing big sister…she has such a caring heart and she will teach her brother or sister so much about life.

Audrey has been coming with me to my appointments and she is SO excited that the doctor is going to “put a baby in Mommy’s belly.” (Yes, I’ve told her quite a bit about the procedure because this will most likely also be the way she will be able to have a baby one day…and this is much easier than the birds and bees conversation!) After the last appointment she asked me…”where baby sister??” Guess she thought the doctor was just going to give us a baby and we were just going to toss it in the car and bring it home with us. Every night Audrey tells me all of the things she is going to share with the baby…the latest were “rice, stachios (pistachios) and milk” and “I do yoga wif baby.” It’s going to be a long 9-month wait for all of us!

Sooooooo that’s where things stand right now. We are nervously moving forward but we are excited to see what’s next for the Bryan Family. Do a little happy dance that I am able to produce a lot of healthy eggs so we can make sure we get a happy, healthy baby!

xoxo

 

 

Free At Last!!

We are FINALLY free to live our lives!

Our trip to Cincinnati couldn’t have gone any smoother. The rides to and from Cincinnati were uneventful (finally, a trip without puking!), we were able to visit some of our Kentucky family on Sunday and we received nothing but good news from each of the specialists we met with. So far, 2017 is turning out to be a really good year for The Bryan Family!

Audrey received an echocardiogram first thing Monday morning. She was a perfect little patient and the tech just kept commenting on how well she was behaving (proud Mommy and Daddy moment). The results showed that everything with her heart looks great and that her blood clot is even smaller! Quick note, there’s never been anything wrong with Audrey’s heart but they will continue to check her yearly to make sure the chemo, steroids, etc. haven’t done any long-term damage in there.

Next, Audrey met with Dr. Jordan and Jessica. They reviewed her immune studies along with her regular labs and said that everything is moving in the right direction. Her engraftment continues to be 100%, her immune system is growing stronger, they ended 4 of her medications including her weekly Hizentra infusions (yay!), they want to remove her tubies in May and she will begin immunizations (again) in August. Audrey was “officially” approved to begin school in the Fall and she is allowed to slowly begin some social activities (we still need to try to keep her as healthy as we can but this is huge!). And, most importantly, we don’t have to return to Cincinnati for a whole year!

Our last appointment on Monday was with an endocrinologist. They didn’t have much to tell us right now since Audrey is still taking Hydrocortisone and they won’t be able to run any real tests until she’s completely off (this will be sometime in September) but they did show us the growth chart and, while she’s below every curve on the chart, she is finally growing again and she should be able to catch up in the next year or so. They want to do some follow up bloodwork in about 6 months to check her thyroid levels and see how everything is functioning. Audrey may need to go on some additional medications but we’ll deal with that when the time comes!

We were asked to participate in a fertility study since we opted to have one of Audrey’s ovaries removed and frozen (the chemo she received during the transplant conditioning most likely fried her reproductive system) so they will be tracking her reproductive system including puberty, child birth, etc. over the next 20+ years. They will then be able to use this information for future patients and can hopefully adjust the regime to prevent as much damage as possible. Pretty amazing how far science has come and how far it still has to go!

We stayed at The Ronald McDonald House while we were in town. Usually pulling into the parking lot sends me into a complete panic attack and I feel like I’m going to be sick but this time it was different…we were actually happy to be back and I think we all got some of the best sleep we’ve had in a REALLY long time. We got to see some familiar faces, eat some good food and we were even able to visit with a baby alligator from the nearby aquarium. It was good to be “home.”

On Tuesday morning, Audrey had an appointment with an allergist to figure out why she has had a non-stop runny nose since last June. Unfortunately, we didn’t get any real answers. They did a back scratch test which all tested negative and they gave us a prescription for a nasal spray which doesn’t seem to be helping at all so it looks like we’ll just ride it out a little longer and hope it goes away!

Our last appointment was at noon on Tuesday. It was a “DEXA scan” which is used to test Audrey’s bone density. As you know, Audrey has had two broken bones, she’s been on a crazy amount of steroids and we’ve been told that she has extensive osteoporosis. The endocrinologist warned us that Audrey would score pretty low on this initial scan (no surprise!) but that it would be used as a baseline for future scans. We were in the room for maybe a total of three minutes and then we were on the road out of there…woohoo!

While we knew that Audrey was doing well, it’s SO nice to have the actual confirmation from the doctors. We are good, we are ALL really good and our girl is going to be OK.

———————————

Here are some of the new things we have going on right now…

  • Audrey has been accepted and is completely enrolled in Eastern Ridge School for the Fall!
  • We rejoined our old playgroup and cannot wait to get back out there with the other kiddos and their Mommies!
  • We have been asked to speak at the annual Histio Association dinner this May in NYC and share our story with some of their donors.
  • I was asked to join the Family Advisory Council at the Ronald McDonald House in Cincinnati.
  • Team Audrey has a new logo and will be getting some other fun stuff in the coming months!
  • Audrey and I have been busy prepping our fruit and veggie garden that we’re going to begin growing this Summer.
  • Official potty training has begun! Audrey’s been using the potty for a very long time now but we’ve never really been serious about it…now is the time!
  • We are busy planning a trip to Disney in September!
  • And Dakota passed puppy school (but she’s still just as crazy as she’s ever been!).

 

Oh and don’t forget…every Tuesday in April, Not Your Average Joe’s in Lansdowne is giving 15% of their sales to Team Audrey if you present this certificate!

 

Enjoy the weekend!

xoxo

Can’t Believe It Has Been A Year!

It’s been a VERY long time since I’ve posted but, I’m not going to lie, I’ve really enjoyed it. Things have been kind of quiet and somewhat normal the last few months and I was afraid to jinx myself by putting it into writing! But here it goes…

Audrey is doing extremely well right now. She was officially weaned off of the Orapred (the bad steroid) about a month ago and she has been doing REALLY well. So far, we have avoided a hemolytic anemia flare up, her hemoglobin was 11.1 yesterday (I think that might be the best she’s had since before she was diagnosed!), her weight continues to come down and I think she’s the strongest she’s ever been in her life. Things are really, really good. Audrey is getting closer and closer to being a “normal” child and the craziness of last year is becoming more of a distant memory with every passing day.

Pending some upcoming immune studies, Audrey will hopefully be starting school in the Fall (only two days a week). She will hopefully be getting her tubies out in the next few months. And most, if not all, of her medications will hopefully be ending in the coming months as well.  All of those things will be HUGE for us!

Audrey LOVES to sing and dance, she talks ALL the time, and her little personality just lights up a room…she is, seriously, the happiest child I have ever met. She is obsessed with Dakota (the feeling is mutual), her favorite nighttime activity is doing bellyflops onto her pillows and she gives the best hugs and kisses EVER. Audrey continues to make new friends wherever we go and she absolutely loves exploring the “new” world around her as we slowly reintroduce her to simple things that she was denied this past year (grocery store outings, being allowed to walk to appointments vs being in her bubble in the stroller, giving out hugs and we even took her to a restaurant this past weekend with family).  There are SO many things for Audrey to see and do and I am SO very grateful that we get to experience them with her…again.

The blood and bone marrow registry drive celebrating Audrey’s one-year transplant anniversary was a HUGE success and I couldn’t be happier with the results. We were able to collect 78 units of blood products and added 23 people to the bone marrow registry…not bad for our first year! We were able to catch up with friends, co-workers and neighbors and we were able to talk to strangers that wanted to “meet the little girl on the poster.” I am really looking forward to doing this for many years to come!

Here’s the news story in case you missed it…

http://www.wusa9.com/news/health/inova-family-health/lifesaving-blood-donations-are-in-short-supply/395365752

We leave for Cincinnati on March 18th, we will visit with our Kentucky family on the 19th and Audrey will have jam-packed hospital days on the 20th and the 21st for her one-year follow-up appointments. She is scheduled to meet with a cardiologist, an endocrinologist, her hematologist (Dr. Jordan) and an allergist. Here’s hoping it’s an uneventful trip and we can get in and out of there without any hiccups!

That’s about it health-wise!

Some other fun things…

  • Save the Date! The first Team Audrey Golf Tournament (still working on a catchy name for the event!) is going to be held on Friday, October 13th at Reston National Golf Course. More information to come!
  • We created a Bravelets page! If you’ve never heard of this company, you have to check them out! They create gorgeous jewelry that benefit MANY charitable groups and remind us to “Be Brave.”
  • Team Audrey is participating in the Histio Hike Shenandoah again this year! The Bryan Family is so excited that we actually get to be there this year and can’t wait to meet other histio families while enjoying the outdoors. Say a little prayer because we signed up for the 11-mile hike and plan on bringing Little Missy with us!
  • I’ve been asked to speak at the Inova Blood Services donor dinner in May, I have a call scheduled with Be The Match to discuss some peer advisory opportunities, and The Histio Association asked if they could give out my contact information to other HLH families in need of support. All of these are REALLY exciting opportunities as I’m really looking forward to being able to share our story and hopefully be able to help families that are going through what we went through.
  • Not Your Average Joe’s in Lansdowne is supporting Team Audrey every Tuesday during the month of April. They will be donating 15% of purchases to our organization just for showing this certificate! Hope to see some of you there!

Some personal stuff…

  • Adam’s dad passed away on February 27th. While we knew that his health was declining, I don’t think anyone was prepared for him to leave us so soon. Audrey was able to visit “Grandpa Joe Florida” a couple of days before he passed. She wore her Tom Brady jersey since he was a huge Patriots fan and she made sure to tell him before she left: “Love You, Big Time!” and he was able to say it back to her. One day we’ll tell her all about her Grandpa.
  • Adam and I have started the initial IVF and genetic testing needed before proceeding with a fertility cycle. We are months away from anything serious but the process has begun! (I’ll share more about the actual PGD process in a separate post another time but I think the whole thing is VERY interesting!)And while it’s exciting, it’s also terrifying…we were screened for 300+ genetic disorders to see if either of us are carriers for anything other than HLH. I want to throw up every time I see an email from them thinking they are going to deliver us more bad news…not because I’m worried about the next child because they don’t even exist yet but because I worry that there could be something else wrong with Audrey. The results are still pending so I’ll continue to double up on my “happy pills” until we know more!
  • I had kidney stones three weeks ago, I now have a cold that won’t go away and next week I get a filling for a cavity they just found!
  • Adam and I were actually able to have a date night a few weeks ago and we’re planning another in a couple of weeks! Seems like such a silly thing to get excited about but we haven’t been able to do anything like this is a VERY long time so an hour or two out of the house is quite refreshing. (We may have checked the nanny cam 25 times while we were away but it’s a work in progress!)

That’s it for now! We will write again after our trip to Cincinnati!

xoxo

This slideshow requires JavaScript.

Bring on 2017!

Can’t believe this year is almost over.

I’ve been looking at pictures from last Christmas and all I keep saying is: “we’ve come a long way.” Audrey’s eyes were sunken in, her hair was beginning to fall out, we weren’t able to get together with any of our family members because Audrey’s immune system was so out of whack, she was extremely pale and we all look VERY tired. Audrey looks like a “sick kid” in those pictures and it’s absolutely heartbreaking to relive those days. BUT, like I said before, we’ve come a long way and Audrey is a happy, healthy, smart, funny, kind, little girl that had an absolutely amazing December.

This Christmas was SO much fun. It’s an understatement to say that Audrey was/is obsessed with Santa…she was SO excited that he was going to come to our house (I think she thought he was going to come and hang out with us) and kept wanting to know how he was going to get in and wanted to make sure we didn’t lock the front door. We did a bunch of fun Christmasy things throughout the month but nothing can beat Christmas morning. Audrey squealed with excitement when she came downstairs and just kept walking back and forth in front of the tree with the BIGGEST smile on her chubby little face. I hate thinking about it because I hate that I ever felt this way but I really wasn’t sure if we would get another Christmas with our girl. Seeing the pure joy and happiness that just flowed out of her was enough to bring tears to your eyes (and may have happened once or twice throughout the day). This Christmas was more than perfect.

Audrey’s big gift from Santa was a pretty awesome playhouse (that I’m still considering turning into a Mom Cave complete with a minibar). Audrey stopped nursing about three weeks ago and we told her that Santa would bring her a VERY special gift for being such a big girl so the house was her “big girl gift.” God knows she earned that playhouse in SO many ways and I hope it brings her years and years of happiness and memories!

Medically there’s not much to report. Audrey’s labs continue to look really good and they continue to slowly wean her off of the steroids. We had one little hiccup but it all worked out! Audrey’s tubies stopped drawing blood on Thursday so we were concerned that she might have another blood clot (since she has already had one and because she tested positive for the Factor V Liden) but, after a dye study at the hospital yesterday, we were told that all is well in there and there’s nothing to worry about! Just like Audrey to give us a slight heart attack right before the end of the year!

A few other fun things…

**Audrey was featured as the year-end story for the Histio Association…https://www.histio.org

**A woman who had ovarian tissue removed as a child (just like Audrey) just had a baby!

http://www.bbc.com/news/health-38312995?ocid=socialflow_facebook&ns_mchannel=social&ns_campaign=bbcnews&ns_source=facebook

**We are busy planning the blood and bone marrow registry drive for February 25th and should have the finalized sign-up info in the next two weeks!

**Be The Match was able to add 55 donors to their registry from the event I spoke at earlier this month!

2016 was a really tough year but what’s that stupid saying, “what doesn’t kill you, makes you stronger”…blah, blah, blah. Either way, bring it on 2017!

xoxo

 

This slideshow requires JavaScript.

Day +280 (I think…)

It’s been a little while since I’ve posted any updates but (dare I say it??) things have been pretty uneventful. There haven’t been any real health changes/updates for Audrey in quite some time…actually, Audrey’s lab results have been almost exactly the same the last three times we’ve gone into the clinic! Dr Lawlor, her hematologist here in VA, is really slow weaning Audrey off of the steroids this time but it appears to be just what she needed! We REALLY need the autoimmune hemolytic anemia to stay away so Audrey can completely come off of the steroids and so they can remove the central line from her chest in March. Fingers crossed!

Things have been so quiet that I’ve actually (kinda) stopped counting the days post-transplant but I think it has been 280 days since that crazy day! Everything important is counted by days post-transplant in the BMT world (days until engraftment, days until discharge, etc.) but that doesn’t seem to matter much these days…Audrey feels and looks good and that’s all that matters right now!

As of right now, we are scheduled to return to Cincinnati mid-March for follow-ups. Audrey is scheduled for a lot of blood work, a meeting with Dr. Jordan, a meeting with an endocrinologist and some tests with a cardiologist. Here’s hoping the Winter is quiet and we don’t have to return any sooner!

In other news…

  • We adopted a puppy named Dakota. She’s an amazingly well-behaved German Shepherd mix rescued from a shelter in Mississippi and Audrey is completely obsessed….I’m pretty sure she says “Kota” 500 times a day. We were a little nervous to bring a puppy into the house not knowing what tomorrow holds for us and because Audrey is still immune compromised but she’s a super sweet dog and we are so happy to have her here with us. She’s exactly what we need right now.
  • We took a spur-of-the-moment vacation down to the Outer Banks last weekend and it was the perfect escape from the real world. We, obviously, weren’t doing any swimming down there since it’s November but that’s OK because Audrey can’t do that right now anyway with her “tubies.” It was pretty quiet since, again, it’s November but that was perfect for us too since Audrey needs to avoid germs right now. She absolutely loved walking on the beach, collecting seashells, playing in the sand with Daddy and nightly ice cream cones. We even took her to an actual restaurant for lunch one day…there may have only been two other people in the place and we held her on our lap the whole time and wouldn’t let her touch anything but we did it!! All in all, it was a perfect little getaway!
  • I received notice on Monday that Team Audrey has been officially granted non-profit status so we’re busy brainstorming some fun events for next year!
  • Team Audrey is partnering with Inova Blood Services and Be The Match on an event in late-February to celebrate Audrey’s first “re-birthday” (the anniversary of her transplant date). There will be a blood drive, cheek swabbing for the BMT registry, food, drinks, giveaways, etc. More info to come but it’s going to be a great event!
  • I was asked to speak about Audrey at a Be The Match swabbing event on December 11th and cannot wait to share her story with others and get some amazing folks added to the registry. I’m hoping this is just the beginning of my involvement in the transplant world and look forward to many more opportunities like this….assuming I don’t botch/cry through this first one!
  • I sent another letter (and some of Audrey’s fancy artwork) to Audrey’s donor right after her birthday to let him know that she is doing really well. The last thing he knows is that over the Summer she was having some issues with her engraftment and that she might need some extra cells. That procedure was cancelled at the last minute because of the AIHA but I don’t think anyone has contacted him since. I’m not really sure what info he receives but I wanted to make sure he knew that she was OK.
  • We have been cautiously taking Audrey to see some family and she/we couldn’t be happier. It’s been really hard not being able to play with other kids let alone her own family members but we broke a few rules and she had a blast playing with her cousins on Thanksgiving and visiting Haley on her birthday. Hopefully we’ll get a little bit of actual freedom after her appointment in March and we won’t have to worry about things quite so much!
  • We spend as much time outside as we possibly can as I know we’re about to be put on Winter lockdown. Audrey’s a great little hiking buddy who talks the ENTIRE time we’re out and Dakota LOVES checking out the nearby parks. It’s a handful at times but we make it work!
  • We’ve recently had two photo sessions to mark some major milestones…the first was a session at Meadowlark Botanical Gardens to celebrate the anniversary of Audrey’s diagnosis date and the second was a breastfeeding session that took place at the clinic to mark the two year mark. I have breastfed Audrey through doctor’s appointments, blood draws, many failed IV attempts, echocardiograms, broken bones, before and after major surgical procedures, during chemo treatments and during the actual bone marrow transplant itself. I was even able to pump in the hospital and have my milk given to Audrey through a feeding tube during the absolute worst of days when she couldn’t eat or drink anything and needed a morphine pump because the mouth sores from the harsh chemo drugs were so insanely terrible. NEVER in my life did I think I would breastfeed this long but I couldn’t be more proud of the two of us…it was truly a life saver. I know that our journey is coming to an end but, more than anything, I wanted something to remember this special bond we have created with one another and that’s exactly what I was able to get.
  • Audrey has a new “smile” that she makes for pictures…the girl loves the camera, to say the least!
  • I was able to take Audrey with me to vote earlier this month and while it might not have turned out the way I had hoped, it will be something I’ll always remember.
  • Audrey is getting so strong and is moving all over the place. Her weight is slowly coming down again as the steroids come down and her muscles are getting stronger and stronger every day. There isn’t a day that goes by that she isn’t doing something new…I am seriously so proud of this girl! She is talking SO much (can’t get the kid to stop talking sometimes), she sings ALL the time, she wants to do EVERYTHING by herself, she LOVES helping me in the kitchen, she is SO excited about Santa and she is just the happiest, funniest little thing I’ve ever seen. She’s come such a long way this past year and I’m so very lucky to be her momma.
  • Oh and we took Audrey to go see Santa but don’t tell Dr. Jordan! 😉

Life is good right now. I am so very grateful that we are able to rediscover the World with our little girl by our side…it is seriously the best. Here’s to making memories and living life to the fullest!

xoxo

—————————————–

This slideshow requires JavaScript.

 

Happy Birthday Eve!

Day +250

A Note to my Daughter on the Eve of Your Second Birthday…

To My Baby Girl:

Happy (almost) birthday, baby! This time two years ago, your Daddy and I (and a bunch of family members) were at the hospital waiting for my labor to progress so we could finally meet you. And, in regular Audrey fashion, you decided to make things interesting and keep us (and the nurses) on our toes until the anxiety and anticipation was too much to handle and we decided for a cesarean. It wasn’t the way your planner Mommy planned for things to happen but you were perfect nonetheless; you were everything I imagined and more. That first year with you wasn’t always easy as we were all learning (I appreciate you being patient with your Daddy and I while we figured it all out) but it was such an amazing year and I learned so much from you. You taught me strength, sacrifice, self acceptance, flexibility and the true meaning of life and love. I would often find myself thinking, “How did I get so lucky? Is this all just too good to be true? What would I do without this perfect little person in my life?” Becoming your Mommy was the best thing to ever happen to me.

This time one year ago, I was watching you on the monitor as you slept, excited about your big birthday party with our closest family and friends without a care in the world. I went to bed thinking, “Is she going to like the cake we got her? Do you think we’ll have time to squeeze in a nap before the party? What shoes should I wear to the party?” And, while that day will be one I will never forget, it pales in comparison to the days/weeks/months that followed. I remember holding you against my chest while you slept in the hospital, bruises all up and down your arms from the failed IV attempts needed to deliver the poisonous drugs that would ultimately save your life, thinking, “How did we get here? How can this possibly be happening? Is my baby going to be ok?” And again thinking, “What would I do without this perfect little person in my life?” Those were some dark times, Peanut. But through it all, you remained so strong, so graceful and so brave. You kept it together for all of us. This past year you taught me that life is, indeed, very short and can change in an instant. You taught me to live in the moment and never, ever take things for granted. You helped me feel emotions that I didn’t know were even possible. You taught me that a hug makes everything a little better. And you taught me that even in the toughest of times, there’s always something to smile about. You were amazing, baby, and I can’t thank you enough for being you.

And now here we are, on the eve of your second birthday, and I’m once again watching my “baby” sleep, thinking to myself, “How did I get so lucky?” But this time I’m wondering, “What does this next year hold for us? What kind of toddler will you be? Will you remember any of those tough days?” There isn’t a day that goes by that I don’t look at you and think about what could have been but you made it, kiddo. You made it to your second birthday and I couldn’t be more proud of you. Tomorrow is YOUR day. It’s going to be a different kind of celebration this year than last but celebrate we will. I love you more than you could ever know, Peanut, and I look forward to SO many more birthdays with you.

Thanks for letting me be your Momma. Sweet dreams, my baby.

fullsizerender

All is (mostly) Well!

Day +232

The Bryan Family made it in and out of Cincinnati without being admitted…woohoo! It was actually a really great trip and Audrey did REALLY well (minus a little carsickness).

We left on Saturday, drove halfway and spent the night in Pennsylvania. (Parent Note: If you’re going to potty train your little ones, don’t do it anywhere near a road trip…we had to stop 6 different times during a 4-hour span for little missy to go potty!) We woke up Sunday morning, drove the rest of the way, checked into The Ron and then took our girl to the zoo. She was SO excited to see the monkeys and didn’t want to leave! We finished around dinnertime, got cleaned up, visited with the mini therapy ponies that were visiting The Ron and then headed to bed early so we could get ready for a busy couple of days.

Our appointment with Dr Jordan wasn’t until 1pm on Monday so we helped The Ron with some marketing photos/videos in the morning (Audrey had her own little filming crew, it was pretty cute.) and just hung around the house until we needed to head over to the hospital.

We met with a hematologist first who wanted to chat about Audrey’s history with blood clots and let us know that she tested positive for the genetic mutation, Factor 5 Leiden. This means that Audrey could have future issues with blood clots and we just need to be aware of this in case she starts showing any warning signs that would need immediate medical attention. While I appreciate being armed with all of this information, it’s kind of nerve-wracking and I can’t help but feel guilty for passing along all of these terrible genetic issues to our girl…sorry, Peanut!

After a crazy amount of bloodwork (40 mLs), we met with Dr. Jordan, Jen and Jessica. There wasn’t much to talk about as there haven’t been a whole lot of changes since we saw them in July but, overall, they are very happy with her progress. She, unfortunately, tested positive for the antibody causing the autoimmune hemolytic anemia which means she could have another relapse but we’ll cross that bridge when we get to it, I guess. Good news: they don’t want to see us again until March! Bad news: they won’t be removing her tubies until March at the very earliest so these things are sticking around a little longer. Oh and her engraftment is still 100%!

It wasn’t a super productive appointment but it somehow lasted almost 5 hours (lots of waiting) so we were all pretty tired when we finished but we promised our girl ice cream so ice cream is what she got…well, actually she just wanted the cone but I enjoyed the ice cream!

On Tuesday Audrey met with an ophthalmologist and an audiologist and received a perfect report from both! The hearing test was pretty neat to watch. They put us in a soundproof booth and put headphones in Audrey’s ears. First, they had someone from the other room tell her when to put these plastic rings back on a peg but then they asked her to put these plastic stars into the basket when she heard a beep (at all different volumes, in different ears and at different lengths of times…some right away, others she had to wait for the beep)…she kicked ass! I was so proud of her for not only having perfect hearing but for being able to follow the directions, use self control to wait for the beeps and then do as instructed. Good job, kiddo!

Once these appointments were finished, we hit the road for another night in PA before making the final drive back home. There were LOTS of potty breaks and one MAJOR carsickness episode that we are still cleaning up after (it was SO gross!) but it was a quick and fairly painless trip that we’re glad to have under our belt. Cincinnati, we’ll see you again in March!

Overall, Audrey is doing really well. She continues to get stronger and stronger despite the steroids trying to knock her down (she’s still on the prednisolone for the AIHA and will be for another 6 weeks or so). She’s a little chatty Cathy and we were told by multiple people in Cincinnati how great her speech is (woohoo!). She loves to sing and dance…the latest songs are: If You’re Happy and You Know It, Head, Shoulders, Knees and Toes and Pat-A-Cake. She is obsessed with superheroes these days especially Batman. She loves to tickle other people…her laugh while doing it is just the cutest. And she continues to exhibit STRONG toddler-like behavior…God help us! 🙂

There’s been some recent sleep regression (most likely from the steroids but we also think this is just some toddler rebellion) so we are going to need to work on things (once again) now that we’re home from Cincinnati. Yay!

Some other fun stuff to report…we’ve been busy collecting toys for Audrey’s birthday toy drive and absolutely CANNOT wait to deliver everything to Inova Children’s Hospital on November 1st. My first Circle of Friends support group through the Histio Association is scheduled for the 22nd (there are 5 of us signed up so far!). We submitted all of the requested info to the Histio Association for their year-end fundraiser in which they will showcase Audrey and her battle with HLH. And the Ronald McDonald House is going to have the video that we just helped out with and they are also planning to use some of Audrey’s pictures in their annual report later this year. LOTS of good stuff happening these days!

Goodnight for now!

xoxo

2016-10-09-14-11-35
Ronald, we’re back!!
2016-10-10-09-50-22-hdr
Audrey and her filming crew!
2016-10-10-10-23-19
Cutie Patootie!
2016-10-10-17-40-45
Yummy!
2016-10-11-14-14-19
Rocking the hearing exam!