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.

21 comments:

Mrs. D said...

First of all, I am so glad you wrote this & got it out.

Second, I honestly can't imagine how pissed you must be! I am mad for you! It's not like you're waiting to hear how you did on a test. IT'S YOU CHILD'S HEALTH that's in danger & YOU NEED TO KNOW. If they tell you it takes 5 days, then they need to give you results within that timeline. NOT keep pushing it back. UGH. Sorry, I'm fuming.

I will continue to pray for you, Kate & Alex. I wish there was more I could do.

Hugs, wine & prayers sent your way.

Syl said...

I am so sorry you didn't get answers today either. I hope you do soon.

Jennifer said...

I'm so sorry. I can only imagine your frustration and urgency. I hope that you get some news and a plan soon.

Shannon said...

It breaks my heart that you are not getting the answers you need for your sweet girl.

I hope that answers come soon so things can get moving and Kate can be on her way to treatment and recovery. You all are always in my prayers.

Erin said...

siiigghhh, those darn dr's are never on time with anything, thats frustrating!! You do not have to be strong you know, its ok to be weak and cry because what you are going through is hard! lean on others as I know they are there for you and so am I! Text me or email me any venting you need to do, I'll listen :)

ABL said...

I found your blog through one of my friends, and my heart just aches for your family. I have an 11 month daughter, and I can't imagine how you feel, but if it helps, do know that I'm praying for you and your family and let off steam as much as you can...it can only help. I hope you get answers soon.

Ashley L.

Ashley said...

Oh Lindsey, I'm so sorry. I would be FURIOUS with them! Why do they give unrealistic dates? You have every right to assert yourself to them. I understand not wanting to ruffle feathers this early in the process, but COME ON, this is your baby girl! I cannot imagine how hard it it for you to just sit and wait, when I'm sure that you feel there is something you must be able to do to get Kate on the road to recovery as quickly as possible. Keep venting as much as you need to, I know I will always listen. I just wish there was more I could do for you guys!

LT (and Max) said...

God bless you!!

Amber said...

Bless your heart for having to deal with all of this! Vent away! Here's to hoping that they get all of this figured out very quickly for you guys so you can all start the healing process.

lissasue3 said...

I'm sorry Lindsey, that is so frustrating. I hope they get their act together. ((hugs))

Lindsay said...

((BIG HUGS)). I've been MIA in blogger land, and am just now catching up on your posts. My heart is breaking for you and little miss Kate. We'll be saying lots of prayers for you all.

Kara5109 said...

My prayers are still with you all in this waiting period. I couldn't imagine waiting, and know that one day would be long enough. I'm glad you could get this off your chest!

MommaM said...

I am frustrated for you! I hope and pray you hear something soon - I can't imagine waiting and not getting any information. :(

Amber and Brian said...

I am so incredibly sorry you are going through this. I don't blame you for being frustrated. I agree with you, they should give you realistic expectations. You're so strong, I hope you get your results ASAP so you can get this process moving along. I will pray that Kate has a easy and speeding recovery!

Paulsen Mommy said...

I'm glad you were able to get this out. Hope it helped some what. I'm sorry you aren't getting any answer/calls. So frustrating!! I keep praying for sweet Kate and your family. Praying for strength. God will carry you through this!! *hugs*

Our Baby "D" said...

You are so strong! I cannot imagine, nor do I know what you are feeling & going through, but I do see a strong woman. You are being a fantastic mama by staying on top of calling & advocating for Kate. I only wish I could hit a fast forward button for you! Being in limbo SUCKS. Sending up prayers for your family! xo

Our Baby "D" said...

You are so strong! I cannot imagine, nor do I know what you are feeling & going through, but I do see a strong woman. You are being a fantastic mama by staying on top of calling & advocating for Kate. I only wish I could hit a fast forward button for you! Being in limbo SUCKS. Sending up prayers for your family! xo

Nicole said...

Ugh. My heart is breaking for you. Your one of the strongest moms I know, and you have tons of prayers coming your way. Lots of Love to your family

the workaholic momma said...

I can only imagine how frustrating and hard that must be to not have answers or a road map. I'm praying for Kate and hoping you get answers VERY soon!

The Gypsy Mom said...

New follower.....I am so sorry to hear of your struggles and frustration today. I know it is so hard to sit and wait. I'm praying that you get an answer today....and that it is the news you need to hear! Praying for your sweet Kate and for your strength!
Penny

Miss Jill and Mister John said...

New follower... and sending lots of prayers that you get the answers you need and want.

I know this offers little solace... but I work in the field (my team works w/donors not patients). I am going to encourage my team to read this post. So often our world become mundane and it's the day to day activities we are use to processing. It's easy to forget what it feels like to be the one on the other side of the phone waiting on information. Two days isn't long UNLESS you are waiting on news that will be life changing.

Thanks for the reminder to work hard and do our best! Stories like your story keeps my staff recruiting more donors and making sure donors follow through, donate, and have a positive experience.

God bless.

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