October 30, 2011

Graft verses Host Disease

We've had a hard week over here. Kate was "off" most of the week. She never had a fever, which was great, but my mom intuition just knew something wasn't right.

At clinic on Wednesday, her liver levels (specifically her AST and ALT) were slightly elevated which can be an early indication of a viral infection. We sent off several viral studies but everything checked out ok. Thursday was a very off day - tons of crying, lots of sleeping, and a baby that was just so far from Kate's post transplant normal.

We had clinic again Friday and all of Kate's liver values are extremely elevated. Her AST is 784 and her ALT is 598. If you know anything about liver values you know that is so incredibly high. Her bilirubin is also elevated as are several other counts.

As of right now all labs point to graft verses host disease (GVHD). While GVHD is common, I was pretty shocked that we skipped all of the "typical" signs they tell you about (skin rash, GI issues) and went straight to pretty major liver issues. Kate was started on steroids as that is the first treatment of GVHD and the plan as of right now is for her to have a liver biopsy (yet another procedure under general anesthesia) Tuesday morning to either confirm the GVHD or confirm other liver issues.

The steroids have been hard as Kate can't seem to really get comfortable and sleep peacefully while on them. We've had several long nights (hence the blogging at 1:30 am) this weekend.

The GVHD diagnosis has me in a funk. I know I need to snap out of it but, right now I am just over seeing all of the other BMT kids we know from our stay excel, move to less clinic visits, and just over all do amazing with their transplants. I am so happy for them - really, I am. I don't want to see any of these kids struggle. But, it's just hard to watch your child be the one who has been back in the hospital, who still has low blood counts, who is battling GVHD, and who seems to be having such a hard time with the entire transplant process.

I was totally aware of all of these complications when we entered into the BMT world. But, if I'm being honest, I never thought we would deal with them. I just always thought Kate would sail right though. Obviously that has not been the case and it's hard to realize, and accept, that we are just not on the fast, complication free track to recovery.

I'm also finding myself very bitter towards moms of healthy kids who freak out over every little thing. This is ridiculous as it is always hard to see your child sick - no matter how major or minor. Fever is no fun, colds are hell, stomach bugs are miserable, and sleepless nights are exhausting for every parent. I am constantly reminding myself that our situation is abnormal and that it is normal for parents to freak out about normal things. It's a constant struggle for me though - I know it is driven by jealousy and I need to work on not letting my situation and struggles discredit the day to day struggles my mom friends are facing.

I also need to keep reminding myself it could be worse. Yes Kate is struggling. Yes it feels like we are dealing with one thing after another (because we are). Yes it is no fun and stressful. But, Alex and I are blessed. We have a roof over our heads, food on the table, amazing jobs that allow us to not have financial worries and allow me to take so much time off to focus on Kate, and we have an amazing support system.

Now that I've gotten all of that out, if you have it in you, we could really use prayers for Kate, her liver, and the GVHD. I'm ready for my happy girl to be back!

- Posted using BlogPress from my iPhone

13 comments:

Sarah said...

I'm so sorry you guys are having a hard time. Will be saying lots of prayers for you guys! Xo

Wendy said...

Uggh! So sorry to hear this! I'll send extra prayers your way!!

Austen said...

Your honesty is inspirational. I am so sorry for all of your struggles and will continue to say many prayers for Kate!

Lynsey said...

I am so sorry you are going through all of this. Lots of prayers will be said for Kate, for you and for Alex.

Kelly said...

Please don't feel bad for wondering why Kate is not sailing through this while other kids are or for getting frustrated with other moms that complain about simple illnesses. My son died in January, and I go through a lot of those same emotions. I think it's part of having a very sick kiddo or having a baby that passed away. Normal, normal! :)

I think of you and Kate often, and I hope this next procedure goes well and that Kate will be on the mend soon!

Auntie Mip said...

Good Sunday Morning,

I have been a peds transplant nurse in Seattle for over 20 years. Certainly this is not what yur want, but not the worst thing in the world either. I know, believe me I know, how scary GVHD is, especially in the liver. For some kiddos a little steroid is all it takes to settle that graft down so it can make a new home for itself in Kate. And it will make a beautiful new home for itself. Kate is a beautiful girl surrounded by love. The treatments for GVHD have come so far in the past two decades and she is in a very good transplant center. Take heart sweet mama. Your girl is strong. You fought long and hard to get her here and she has a long, beautiful life ahead of her. I will be praying for the steroids to do what they need to do. That she won't struggle to much with their nasty effects and that a year from now she is celebrating her transplant anniversary. God bless sweet Kate.

Tamika said...

THoughts and prayers from our family to yours.

Ashley said...

So sorry Kate is having such a rough time!
Praying everything checks out ok with her liver. And, praying for lots of strength for you momma!!

Courtney B said...

Oh gosh Lindsey, I feel so bad for you and Alex having to go through more setbacks and poor baby Kate. Good gracious has she been through the ringer. I know that we don't know each other IRL but I sent you a FB message a looong time ago telling you that my little guy Max, prays for (he calls her) "Baby Kate" every.single.night. He asks god to "put lots of bandaids on her so she can feel better really soon". I know this is probably of no solace to you in this moment of pain and hardship but there ARE so many of us out there that are thinking of you and praying for your entire family every day. We knew when you began on this journey that it wouldn't be a short one. We are still on the road to recovery with you, thinking of you, and supporting you. Hang in there. You WILL all come out of this. God's arms are wrapped around you all, allow yourself to feel the comfort of his love.

Nicole said...

I'll be saying a prayer for Kate.. and thank you for being so honest.
You are truly an inspirational mom and I so hope that things get better for you guys:)

Lindsey said...

I am so sorry that you all have to face this obstacle! Your strength is so inspirational and I will continue to pray for Kate (and mommy &daddy) that she can overcome this obstacle and be on her way to full recovery!

Anonymous said...

sending lots of prayers and warm thoughts to you and your family.

Emily said...

I found your blog through a few others, and wanted you to know that Kate and your family is in my thoughts and prayers. I know you guys are going through a long and difficult journey, but please know we are praying for precious Kate! She is absolutely beautiful.

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