June 27, 2011

Curls!

I've taken a bit of a blogging break after my post last week.  While it was nice to get it all out, I felt a bit exposed afterwards.  I'm just not accustomed to showing my vulnerabilities and felt uncomfortable by showing people that I'm really not that strong and that I am struggling with everything right now.

We have several updates about Kate.  Some disappointing.  Some exciting.  I'll post them all soon.

For now, I'm appeasing the grandmas and great grandmas and sharing the latest thing that has blessed out house!

CURLS!

I have curly hair that I straighten almost daily.  And it looks like Kate may have my curls.  Over the past few days her hair has started curling up in the back!  I love it and am enjoying it so much as we have no clue what her post-chemo hair will look like!

See those sweet curls behind her ear?  Love them!  And see her insane amount of personality?  We've got a mega drama queen on our hands...


Playing with her house!

Smiling for momma!

Kate is so funny these days!  She has mastered the fake cry and knows exactly when to use it.  She has her daddy wrapped around her finger!  I am loving this stage so much!

June 22, 2011

Getting it all out..

This is just a big vent about my current frustration with Kate's situation. It is long, whiny, and probably a boring read - I just need to get it all out.


I am seriously about to go crazy.

We found out Kate needed a BMT June 6 and that the next step would be HLA testing for Kate, Alex, and I so we could all be typed. We were told the BMT coordinator would call to set this up - she did and we were all typed June 9.

Our coordinator was very nice, calming, comforting - I thought she was going to be great during this process. She tells me it takes 5 business days to get HLA test results back. Ok great, no problem. I mark my calendar and adjust my expectations.

I tell myself I can do this, I can countdown, I can make it, I can attempt to keep my head above water. I will do this. I have to do this. I have no choice.

Last Thursday (June 16) we still hadn't heard anything - nothing from a transplant doctor, nothing from a social worker, no results, nothing. I have my 48792835th breakdown since "the day" that changed our lives and call the coordinator.

She is very compassionate, says she understand how frustrating it is to just sit around, and tells me she will talk to a transplant doctor to see if we can have a phone consult to go over the basic BMT process, what to expect, etc all in general terms as the type of donor (family, unknown, marrow, cord blood) impacts things greatly (consult happened - loved the doctor). Oh, and that HLA results can take 5-7 business days.

I get it is only 2 extra days but, my days feel like freaking years lately - I struggle to make it through a 24 hour period of time.

I don’t sleep.

I’m barely eating.

I’ve cried more tears than I knew I had – mostly behind my closed office door for fear of appearing weak to my friends and family.

Two days seem like ages.

She tells me to call her back June 22 (today) and that we will have HLA results, a first pass against the registry, a doctor permanently assigned, and we will know if Kate will be an easy match or a hard match based on the HLA characteristics.

Great, I mark my calendar, put it out of my mind, and wait for today.

I tell myself I can do this, I can countdown, I can make it, I can attempt to keep my head above water. I will do this. I have to do this. I have no choice.

I called this morning and left a message. Well, 10:30 rolls around and still nothing. So I call back and the coordinator answers. Wonderful! I am going to know something!

Except we still don't have any results. And I am told this time that HLA results can take up to 10 business days (which today is business day 10). I try to keep my cool, not get an attitude, remind myself we will be working with this unit for the next 2ish years of our lives.

Deep breaths.

I am so frustrated. I understand that we are waiting for a 3rd party lab (TCH doesn't run HLA in house). I understand that TCH can't magically make a lab report appear. I understand there are processes and procedures that need to be followed.

I get it, I really do.

But, TCH can control what they tell parents. They can make sure that we do not have unrealistic expectations. They can make sure we aren't counting down to a date that isn't going to happen. Tell me it will take a month - I'll mark my calendar, countdown, and be very happy when it only takes 2 weeks. I will think y'all are awesome for getting results to me so fast. I will be thankful we are making progress.

I need progress.

I cannot sit in this limbo much longer.

I need to be doing something.

Anything.

I need to get my baby girl better.

{Almost} Wordless Wednesday!

Not really up for a post today.  I'm in a funk and just sick of sitting around and waiting.

I want to be doing something.

Make progress towards healing.

Anything but sit around and wait for test results, detailed plans, a donor. 

Ok, enough whining, on to pictures!  This is from Monday!

I catch myself taking tons of pictures of Kate's hair.  I want to make sure I remember it.  I just can't imagine it all gone.

My sweet girl.  She is the reason I keep on fighting.

June 20, 2011

Father's Day Weekend!

We had an amazing Father's Day weekend celebrating the best Dad ever!!

No need to reiterate but, Alex and I have had quite the emotionally charged past few weeks.  I wanted to make sure that we took time out of this chaos to celebrate the amazing father Alex is.  We decided mid-week that we should head down to Matagorda for a beach trip just to get away.

I am so, so glad we made that decision seeing as we had a phone consult with one of the transplant doctors Friday afternoon.  We just reviewed general information on the call but, we did learn that Kate is going to need a very intense chemo regime during conditioning (the phase leading up to the transplant).  So, Alex and I were a bit bummed after the call.  Time away was just what we needed!

We had such a great trip - it was just for the day but, it was perfect!  Kate slept on the way down which meant Alex and I had almost 2 hours to just talk and enjoy time together.  The drive to Matagorda is so peaceful and reminds me of the many times Alex and I drove from Starkville to Jackson while dating!

Our trip confirmed what we already knew - Kate is a water baby!  She adores the ocean, laughs hysterically when the waves splash her in the face, and just loves the beach environment!

I decided not to bring my big camera as I always stress about getting the perfect picture and don't enjoy the moment - but I did bring Alex's waterproof point and shoot and managed to get a few good snapshots.  If any of y'all are looking for a waterproof camera, I highly recommend this one:



Kate and her amazing Daddy!

Queen of the beach!

Kate and Momma!

My sweet family!

We had a low key Sunday - headed to pick up some food for Kate (um, dairy, egg, soy free is SO hard to find - I am not a fan of infant food allergies), hung out, gave Alex his present, and had a nice dinner!

Kate made Alex a precious homemade book filled with drawings, hand prints, macaroni art (something Alex has talked about getting since the day we found out we were pregnant), pictures of the two of them, and a long list of why he is an awesome Daddy!

Kate giving Daddy his present!

Alex - Kate and I are so incredibly blessed to have you in our life, as the leader of our family!  You are a wonderful husband, father, and friend!  I am amazed by the advocate you have become for Kate over the past two weeks and I couldn't ask for a better partner to fight this fight with.  I know you will do anything to give Kate a second chance at life - we will beat this - and we will be stronger for it.  Kate and I love you so much!

June 19, 2011

Happy 10 Months Sweet Kate!!

My goodness, what a month this has been!  We've celebrated new milestones (walking and teeth) and we've cried about the journey we are about to embark on.  Our tenth month with Kate has definitely been filled with highs and lows.

But, even in those lows (which have been so very, very low - I'm barely holding it together these days - maybe I will do an honest, emotionally charged post about my struggles with everything soon) we have soaked up every ounce of the little diva baby that makes our house a home and fills our hearts with so much joy!

Here is a prime example of said little diva baby.  Kate decided she wanted to lounge during her monthly photo shoot.  I tried to sit her up and she would cry big, fat crocodile tears.  Then she would get back into this position and be all smiles.  Can we say strong willed?

10 month stats:
Weight: 18 pounds 6 ounces
Length: 28.5 inches
Diapers: Still hanging out in size 3 - which she has been in since she was 6 months old
Clothing: all over the place - 3-6, 6, and 6-9 dresses fit.  We need 9 or 12 month rompers/ bubbles since Kate is so long, and we are in 12 month jammies due to length as well!

*The biggest news this month is that you finally has teeth!!!!  Four teeth to be exact!  You cut all of them over the past 10 days and they are so cute!  You can only see 3 teeth in this picture - her bottom left has cut the gums but isn't sticking up much yet.

*Another HUGE milestone is that you officially walk!  You are up to 10-12 steps at a time but still prefer to crawl.  You have no patience (hmm, wonder where you get that from?) and realize that crawling is still the most efficient way to get what you want as quickly as possible!  I am positive you are so advanced in these milestones so you can learn and explore before you start feeling horrible from the chemo and your stay in the hospital.

*You talk non-stop!  Again, who do you get that from?  You may look like your Daddy but man, you are a mini me!  Strong willed? Check.  Loud? Check.  Talks a mile a minute?  Check.  Determined?  Check.  Stubborn?  Check.  Huge heart? Check.  Think you are hysterical?  Check.

*You've also started singing.  Danielle (your amazing nanny) and I have both noticed that you talk and also have a very sing-songy talk that you do when we sing to you!  I hope that you love music as much as I do! 

*Your favorite song is Wheels on the Bus.  If we sing it during a blood draw you smile and try to clap - it is definitely your "comfort" song right now!

*You love, love, love your puppies!  You've always been a fan of them but these days you crack up laughing whenever you see them!  Apparently you and Ollie can communicate without talking - at least that's how it appeared today when y'all were examining your baby doll!  I'm guessing something was odd about her right then?

*You are such a happy baby!  Yes you have your moments but, overall, you are such a joy!  Quite the change from the colicky newborn you were!

I say this every month but I cannot believe we are only 2 months away from the big 1!!  Time is flying!  Days like today, when we celebrated your amazing Daddy and the wonderful 10 months you have blessed us with, make me almost forget the fight we are fighting.

I love you so much sweet girl.  And I promise to always keep you smiling, be your advocate, and give you the world!

Father's Day post coming tomorrow!

June 17, 2011

New Toy!

Kate got a new toy in the mail Wednesday and she absolutely loves it!  Thank you Lily and Sophia for our new Laughing house!


Kate has been exploring the house since we put it together!  Her current obsession is playing peekaboo through the window and checking the mail!  Speaking of mail, we have gotten some very sweet notes in the mail over the past week!  Alex and I are continually blown away by the level of support we are receiving during this hard time.


This is my favorite toy so far!  I love how interactive it is and how it will grow with Kate.  There are so many features she hasn't discovered yet and I can't wait to watch her learn and understand how to do more and more!  My mom has one at her house so Kate played with it when we were in Florida.  It's amazing the difference a few weeks can make though because she understands even more now that she did when we were visiting!

An added bonus is that it is all plastic and will be SO easy to keep clean when Kate comes home from the hospital.  We will have to sanitize all of her toys every night so I am starting to phase out a lot of her plush toys that have to be washed and then dry.  Things that can be wiped down quickly are going to make the nightly cleaning ritual go much quicker!

If anyone is wondering, it is the Fisher Price Learning House.




I would highly recommend this to anyone with a baby that is crawling and starting to pull up - get it early so your child can enjoy it for a long time!  I find it much sturdier than our music table and feel more comfortable with Kate pulling up and walking around it!

I hope everyone has a good weekend!  Kate and I have been busy all day making Father's Day presents for Alex!  It has been messy loads of fun!

June 14, 2011

Answering a Few Questions

I've had several questions come in via email and comments and thought I would address some of them here to reach the masses.  It is just easier on me to reply once, here, instead of answer the same questions over and over again!

So, here I go!

Did you bank Kate's cord blood?  Can she use her own cord blood?
No, we did not bank Kate's cord blood privately.  We worked with a donation program through MD Anderson.  I am currently trying to figure out how to deal with that situation.  I feel horrible that someone may have received Kate's cord blood seeing as it is genetically defective.

However, even if we had banked Kate's cord blood, she would not be able to use it.  One of the biggest myths (and reasons why we didn't privately bank) is that your child's cord blood can help them.  Very rarely is that the case.  Kate's issues are genetic, meaning her body does not have the capabilities to create platelets. Her cord blood is the same way.  We need another individuals healthy bone marrow to cure her.

What can we do to help?
Pray for our family.  Pray for healing for Kate.  Pray for strength for Alex and I.  Pray for me as I will be trapped in a small hospital room with Kate for weeks in isolation.

As of now, there is not a lot that anyone can do to directly help us.  We know that we will need help once Kate starts chemo, has her transplant, and comes home.  But, right now, we are doing a lot of waiting around.

One way that people can help anyone currently waiting on a bone marrow donor is to register with the national registry.  We are working with DKMS Americas for a bone marrow drive in Ocala, FL (where my sister lives).  Kate will be featured as a drive campaign in the coming weeks.  There is also talk of drives in Houston, TX as well as Lafayette, LA.  We will keep everyone updated with details as they become available.

At this time, there is no way to be specifically tested for an individual.  The point of the national registry is to help the general public when a need arises - not to join momentarily for a friend/ family member.  I can only imagine the heart break that comes with thinking you have a donor only to find out that the donor is not actually willing to donate to anyone other than someone they know.  I would hate if someone joined the registry specifically for Kate and then put another family in this situation.  Please think long and hard about your commitment before registering.

I've heard stories of people sitting on the registry for 15-20 years before being called to donate.  If you feel led to join the registry, thank you!  If you do not, we completely understand.

Does Kate have cancer?
No, Kate does not have cancer.  She has genetic bone marrow failure.  However, the bone marrow transplant process is the same for cancerous and non-cancerous patients.

Will you have more children?
I've always wondered when it became acceptable to ask about a women's reproductive decisions.  But, apparently lots of people are curious about this.

At this time, Alex and I have decided that we will not have anymore children.  There are several reasons why we have made this decision.  If we ever change our mind, we will have to do invitro fertilization (which is how we got pregnant with Kate after a very long struggle with infertility) with genetic testing of our embryos to screen for CAMT.  This process is very expensive and given my health issues, would not give us very good odds of succcess.

I am really struggling with this and ask for prayers that my heart comes around to being the mommy of just one child.

What is the timeline for everything?  How long will the process take?
We aren't really sure.  We should know more within the next 7-10 days.  Since Kate is not critical right now, we have some time to wait for the perfect match.  That may change in a month if her condition takes a turn for the worse, but for now, we can be very selective when it comes to finding the right donor.

We will not start conditioning (prep work, chemo, etc) until a donor has been identified and agrees to donate.  Kate's hematologist has told us that once a donor is identified, we can plan on about two months of prep work before transplant.  So, at the earliest, we would be looking at at September transplant.

After the transplant occurs, we will have several big milestones to reach - 100 days post transplant, 180 days post transplant, 1 year post transplant.  I will explain these milestones as we get farther along in the process.

How long will Kate be in isolation?
Again, we are not sure.  The BMT unit at Texas Children's allows all of the BMT patients to interact with each other.  So, we will be isolated to the unit, but not isolated into a room during our entire hospital stay. It is my understanding that visitors will not be allowed while we are living in the hospital. 

Once Kate comes home, we will not allow any visitors inside the house for at least 6 months, possibly longer.  It is just not worth it to Alex and I to chance someone bringing something into our home and getting Kate sick as sickness causes all kinds of issues in transplant patients. We hope everyone understands this. 

We have also started partial isolation already.  We need Kate to be as healthy as possible right now and keeping her inside our home is the easiest way to ensure we are limiting her germ exposure.  I apologize in advance if we seem anti-social, we are just doing everything we can to promote a successful transplant.

I think that covers the popular questions! If you have any other questions, feel free to leave them in a comment and I will answer them to the best of my ability.  I will not answer any question that are negative or have negative intentions.  And, I will not publish comments that are nasty, rude, and downright disrespectful (yes, they have been coming in - apparently is it attack the mom of a sick kid week in the blog world).

I want to remain as transparent as possible during this process in hopes of raising awareness and being a resource to future transplant mommas who are facing this scary reality.  I am thankful for those who have documented this path before me and hope I can do the same in the future!

June 13, 2011

Sunday {not so} Funday


Didn't you know shiners were the hot, new summer accessory?  Or maybe Kate is just a little trend setter!

Yesterday evening I was playing with Kate and got up for a second to do something quickly.  In the few seconds that I took my eyes off of her, she managed to smack her cheek on our hardwood floors.

I felt, and still feel, horrible. 

Her eye area swelled up and bruised instantly so I call the hematology on-call line.  Since the spot was continuing to swell, and had noticeable blood under the skin, we were sent to the Texas Children's ER.

I'm learning that the only perk of having a sick child is that the ER knows you, and gets you in FAST.  The on-call let the ER know we were coming and used phrases like neutropenic, congenital bone marrow failure, and waiting for a bone marrow transplant which had the ER docs and nurses moving!

We were taken back, saw 2 doctors, had blood drawn and sent to the lab, and had a head cat scan done within 45 minutes. 

The only issue we had was regarding an IV.  Alex and I didn't want an IV started until we knew for sure Kate needed fluids and/or sedation.  Kate doesn't even flinch when she has blood drawn but she freaks the freak out when an IV is placed.

The nurses argued with us for a bit about the possibility of having to prick her twice if we didn't get the IV right off the bat.  And I argued back about how hard an (unnecessary) IV would be on her. 

We won that battle - and I was so thankful that we fought it because an IV was not needed.  Sometimes, momma does know best!

We got the CT and CBC results within about an hour and a half.  Kate's CT was thankfully normal (they were checking for internal bleeding due to low platelets) and her CBC told us that her platelets are still really low (but that isn't new news).

We were in and out within 2.5 hours. Not bad for an ER.

Needless to say I haven't let Kate out of my sight all day - I'm still a bit on edge from the incident and feel horribly guilty that my mistake could have landed Kate in the hospital receiving a platelet transfusion.

I've got to work on controlling my mommy guilt better before we get any further in this journey.  Please pray for that!

On a lighter note, here's is KK pre-shiner - taken yesterday!

A peak at our newest tooth - on the top!  Love her lashes too - I'm praying chemo doesn't steal them from us. And ignore the booger!

We still don't have any more news - and we don't expect to hear anything else for another week.  I will update everyone as soon as we know more.  Thank you so much for the continued thoughts and prayers!

June 10, 2011

Butterfly Garden!

I just wanted to document these pictures before I forgot about them!  I can't believe they are a week late - well, I can given the week we've had.  I guess I need to realize that my new normal is going to me less blogging and more researching about Kate's transplant.

Just a quick note - our appointment Thursday went well.  I was confused about what was happening so we didn't meet the coordinator.  But, we met several nurse and they all fawned over Kate.  She seriously worked the BMT unit like it was her job.  She ever gave a huge smile and showed off her dimple during her blood draw.

She is a smarty and knows that she needs to be making friends with her nurses!

Ok, back to the butterfly garden.  Last Saturday we took Kate to the Museum of Natural Science.  She wasn't feeling great and wasn't really in to it.  But, we had fun and got out of the house for about an hour which was nice!

Kind of crazy to think that this was our last carefree family outing.  Yes we knew something was wrong with Kate's blood, we've known that for 8 months.  But, knowing what it is, and what needs to be done to fix it, has changed everything.

I just pray we have many more carefree, but of course thankful, family outings in the coming years.

Daddy teaching KK all about bugs.  Gross!

Watching the butterflies fly all around!

She spotted a butterfly and had to go touch it.  Such a rule breaker trying to chase and touch the butterflies!  Ignore how pasty white I am please.


Kate looks so big to me in this picture.  She was too nosey to actually look at me because god forbid she miss something but, I can't get over how much she looks like a toddler.  My little baby is growing up fast!

I've been told by pretty much everyone that Kate has big feet.  I guess only time will tell if she will be able to borrow my normal shoes or will need to raid her Lala's closet to find some boats to wear.

We won't have any more news on the treatment front for at least a week.  I will keep everyone posted though.  As always, thank you for the continued prayers!

June 8, 2011

New Blog Button & Specific Prayer Request

Cat has such a sweet soul and designed a beautiful "Pray for Kate" blog button - it's on the right sidebar!

Feel free to grab the code, post it on your blog, and help spread the word that Kate needs all the thoughts and prayers she can get right now.

I want to thank all of you for the support you have shown my family over the past 3 days.  I am amazed by the comments, emails, tweet, FB messages, etc that I have received. 

I am working on a post that answers several questions we have been asked - it should be up tomorrow or Friday.  My sister is also working with a donor organization and is planning a huge bone marrow drive in Central Florida (where my family current lives) in the next few weeks.  I will provide details as we have them.

For now, I have a specific prayer request. 

Please pray for Alex, Kate, and I tomorrow.  We are heading to the transplant center for our "typing" at 11am central time.  I am not nervous about the blood draw at all.  However, I am sick to my stomach about walking into the unit.

You only enter the bone marrow transplant unit because you NEED to be there. 

We officially qualify.

My child is a transplant patient.

How did we get to this point?  How is this my life?

We will do it - I will hide my fears and walk through those double doors and face our reality.  But, I am going to need strength that can only come from prayer to make it. 

I will tell myself that Kate will fight this, and will be a winner. 

I will believe it because she is going to beat this.  She will live a long, beautiful life.

But, I will still be filled with fear for Kate's journey.

On a lighter note - here is some Kate cuteness from Sunday - before our world was turn upside down.

June 7, 2011

Congenital Amegakaryocytic Thrombocytopenia

I'm not really sure how to lead into this...

After almost 8 months of testing, no answers, more testing, bone marrow biopsies, and even more testing, we have answers. 

Answers that I never wanted to have.

Monday morning, Kate was diagnosed with Congenital (from birth) Amegakaryocytic (lack of megakaryocytes or large cell-making cells) Thrombocytopenia (without platelets) - a very rare (I'm talking less than 100 known cases in the entire world) genetic bone marrow failure. 

Kate needs a complete bone marrow transplant as soon as possible. 

We are shocked, terrified, heartbroken, and so upset that our sweet, innocent baby girl is about to be put through so much. 

However, we realize we are also blessed.  We have a support system like none other, live 15 minutes away from the best pediatric bone marrow transplant center in the country, have an amazing team of doctors, and most importantly, we serve a mighty God who will wrap His arms around my family and carry us through this journey.

I will update with more information as it comes in.  Right now we are waiting for insurance approval (seriously insurance, we are talking about my baby girl - get on it so we can get started) so that the transplant team can contact us and start the process.  Once Kate is "typed" we will start the wait for a donor.

I claimed this verse during my struggles with infertility and it seems fitting to claim this verse again.  I feel like it is our verse for Kate, we just didn't know it would be her life verse when we were longing for a child. 

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

We are asking for any and all prayers.  Please talk about Kate - add her to your prayer list, email your granny that prays all day long, get the word out. 

Kate needs it. 

Kate is a fighter.  She proved that a while ago.  I just wish she didn't have to fight this fight.

I know I have kept quiet about our journey to this point - I will post a bit more about how we got to this diagnosis later this week.

June 5, 2011

Catching Up! Plus a Video of KK walking!

I am so far behind on blogging.  Like, almost a week behind.

Things have been crazy around here.  Kate is in the middle of some major sleep regression - I'm talking sleeping maybe 5 hours total a night.  I blamed it on teething for a few nights but she is sick now so maybe it's that?  Either way, we are heading to the pediatrician tomorrow and praying she starts STTN again once she gets better.

Pre invasion of the sickies

Ollie is not too sure about Kate walking all over the place!

This is a horrible picture but you can see Kate's two top teeth  are just about to pop through her gums.  She still has no bottom teeth though!

Thursday night is when the sleep regression started in full force.  I was up with Kate ever 1.5-2 hours and then from 3-5:45am.  It was a long night.  But, it didn't stop us from having Susannah and Reid over for a play date.

Kate was obsessed with Reid - she crawled right to his car seat and talked to him, rocked his seat, and just loved looking at him!  She was like a little momma in training!  It was too cute!

It was more like a mommy date but, whatevs.  Susannah is one of my best friends here in Houston and I needed a day with one of my girlfriends!  And, taking pictures of this cutie was an added bonus!  Reid is so precious and his eyes, OMG, they are amazing!

Friday night was exhausting - Kate refused to sleep and was up until almost 11.  It was worth it though because she started walking tons - and is now up to 7-8 steps at a time!


Saturday morning we decided to push through our exhaustion and take Kate to the Museum of Natural Science to visit some of the exhibits and the butterfly garden.  I'll post about that this week as I have several cute pictures!  Kate was over it about 10 minutes in and really start feeling bad Saturday afternoon. 

Today has been hard - filled with sneezing, coughing, and lots of snot.  Seriously, how can she make so much snot?  It is pitiful.

I hope everyone had a great weekend - and that y'all all got more sleep than we did!

June 1, 2011

Sweet Sugar

Kate officially knows how to give her baby some sugar!

And, she has an obsession with the piece of lettuce from her Melissa & Doug spill and fill picnic basket.  She is following in Aunts Barbs and momma's footsteps I guess - we were pro chicken and lettuce dieters in our college days!  Ha!

And, these eyes - I don't think they could be any prettier!

And, in case you aren't well versed in Southern, sugar = kisses.  So, giving (or stealing) sugar simply means giving (or taking) some kisses!
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