Annie had her hernia surgery on July 28th at Seattle Children's Hospital by the same doctor who performed her transplant, Dr. Healey.  She was so scared that it was going to be awful like the transplant, but within a couple of days she was back to her climbing, dancing, jumping self.  We had to warn her to take it easy so she wouldn't cause problems with the stitches!  We rented a wheelchair thinking she would need to be pushed around when family came into town, but the wheelchair just ended up being a fun toy for the week.  A few days later Annie went in for labs and her liver enzyme numbers were high.  The doctor said it might have been due to the surgery and stress, so they let us repeat labs a week later.  Those numbers came back perfect, and her EBV is at a wonderfully low 68.  So now we are preparing Annie for 1st grade, and we're hoping all will go well with her numbers throughout the year.  I can't believe it has been 6 months since her transplant!  What a ride!

Annie went to her appointment this week to find out what was causing the bulge in her groin area.  She saw two doctors, and they both confirmed that it wasn't related to lymph nodes (phew!)  But it IS a hernia, and she will need to have it surgically corrected within a month or so.  She has another appointment next week with her surgeon who will tell us more.  But it looks like it is probably a loop of intestine that has fallen out of place through a weak spot in her body.  Needless to say, she's not excited about another surgery.  But isn't she cute playing tea party with her kindergarten classroom pal "Kody"?  Each kid in her class got to take him home for a sleepover during the past few weeks.  Annie's nice teacher waited till all the other kids had their turn and then took it home and washed it so it would be germ-free for Annie to take home.

First Iet me say that Annie's EBV came back negative, which was a huge relief!  I could hardly believe it went down that fast, but HOORAY :)  A couple of days ago, I noticed a bulge in Annie's groin area.  It has become bigger now, almost golf ball-sized.  Being that it was the weekend, there wasn't much I could do as far as getting her in to see somebody, but you know me... I started searching the internet for possibilities.  There seem to be two: either a lymph node is swollen in that area from when her EBV was high or she has a herniation from her lower intestine bulging through a weak spot.  When Annie had her transplant, her new liver had an extra bile duct (because of where it was split, I'm told).  So they had to perform a "Roux en Y" which means cutting the lower intestine and reattaching it to that extra bile duct so the bile would have a safe place to go.  I read that sometimes transplant patients can have complications leading to an intestinal hernia.  I talked to one of her doctors this morning, and she confirmed that it is probably one of the two problems.  They are going to try to squeeze Annie in for an appointment today, so I'll update when I know something.

So last time I blogged, Annie's EBV had dropped to a 77, and all seemed well.  But last week her labs showed normal liver numbers (good) and an EBV increase to 700 (bad).  Annie's doctor said that again, we needed to lower her tacrolimus drug (anti-rejection medicine) so that her body can fight it down.  She is now taking 1 mg in the morning and 1 mg at night.  It seems like such a small amount.  Her immune system will wake up more to fight down the EBV, but it may also notice that her new liver isn't really hers, causing rejection.  If the EBV gets too high, though, it can cause lymph node cancer (see blog about "the balancing act" for more details).  Last night we went in for repeat labs after being on the lowered dose for a week.  Her liver numbers came back great (thank heaven) and her EBV has not come in yet.  I really hope it has gone back down!  I talked to another mom last night whose daughter has been in the 700s before.  She said lowering the tacro really works; you just have to hope it doesn't compromise the liver.

Annie used to have blood draws twice a week.  Before this EBV scare, she made it all the way down to once a month.  But now she's back to once a week.  Thank heaven for Tyler, her favorite phlebotomist.  He's so fast!  Annie is always relieved to see him when we walk into the lab.  Tyler is going to Duke Medical School in July to become a transplant surgeon.  Annie will miss him so much!

Here's Annie the day she went to her friend's super dress-up makeover birthday party.  Nothing makes her happier than being dressed up!  We found out Annie's latest blood levels on my birthday.  All I wanted was to see good numbers.  They were terrific! (ALT - 33, AST - 44, GGT - 19)  Her tacrolimus level has come down to a 9.3 now that they've lowered her dose.  And happily, her EBV numbers have gone down from 210 to 77.  The nurse tells us that under 38 would make the team even happier.

Her scar is getting lighter as the weeks go by!  The other day some more stitches poked through her skin on the right corner of her scar.  Annie didn't want to pull them out, but eventually they just fell out (and thank heaven they were very short).  Another scare this week is that Megan came home sick and vomiting and quickly passed it to Annie.  She couldn't keep her medicines down two doses in a row.  I thought she might have to go to the ER for dehydration and IV meds, but she recovered and is now doing well!  What a week!

Please help us spread the word about Annie's story!  Our team has put together a 5-minute video telling the amazing journey of Annie's sudden liver failure and the miracle of her life-saving transplant.

Our first goal is to raise $10,000 by June 30th.  You can help us by sharing this video with everyone you know.  If you are associated with a corporation that can help, please contact Kress Franzen: COTAforAnnieR@gmail.com

 Another clinic appointment has come and gone, with both good news and some news that is making me nervous.  Annie's liver numbers are still great (all within normal range) and her tacrolimus level is at a 12.1.  But today I received a phone call from our transplant coordinator who told me that on Annie's last EBV test she showed borderline positive (a count of 200 - although I don't know what a dangerous number is).  EBV is the short name for Epstein-Barr Virus infection, also called Mononucleosis.  About 85% of adults test positive for EBV (meaning they have been exposed to the disease in the past).  Annie's donor was positive and Annie was negative.  This makes her much more vulnerable to becoming positive herself.  Normally this wouldn't be a huge deal, but in liver transpant patients, EBV can develop into Lymphoproliferative Disease (LPD), which is a cancer.  It can also be responsible for chronic fatigue in transplant and healthy patients, and occasionally it can cause hepatitis and damage the liver.  So, as you can imagine, I'm a nervous parent wanting to know the action plan.

The transplant coordinator told me that the doctors want her to take less of her immunosuppressive drug (the tacrolimus) so that her body will be able to fight it down before she actually does become clinically positive.  They say this usually works great, but being that she is only 3 months post-transplant, lowering her drug could also cause more rejection.  For some reason, I thought EBV was something you got once and never got again like the chicken pox, but apparently it is something that can occur in people multiple times because the body doesn't really eliminate the virus; instead it becomes dormant in cells and can reactivate at a later date.  In regular people it could just manifest itself as a cold until the body fights it down, but in patients with immunosuppression it can escalate to the point of lymph node swelling and the possible maligant condition LPD. 

So tonight we start the lowered dose of tacrolimus, and in two weeks we check numbers again.  More stuff to balance -- I'm praying it will all go well!

It has been a great week for Annie.  She was the VIP in kindergarten and got to go in on two different days to share information about herself.  She showed pictures, read her favorite book to the class, shared her favorite toy, and filled the estimation jar.  She even got to do an art project on Friday for an hour and go out for recess.  She really enjoyed being with her friends again!  On Saturday, she finally got to celebrate her 6th birthday with friends.  Her party was at the Kids Quest Children's Museum in Factoria.  She had such a great time and didn't want to go home when it was over!  Last night Annie went to Children's Hospital for her labs, and I just got the numbers back a few minutes ago:

AST - 43

ALT - 38

GGT - 33

And her tacrolimus level is 12.8 (immunosuppression drug).  Everything is still perfect!  I was a little bit worried because they lowered her intake of 2 drugs.  One of them was suppressing her bone marrow too much and she's had some bruising that won't seem to go away. 

Annie and I just got back from a clinic appointment at Seattle Children's Hospital.  The three liver numbers we watch so carefully each week have almost all fallen into a normal range!  We're so excited!

AST - 43 (normal range is 5-41)

ALT - 34 (normal range is 5-40)

GGT - 43 (normal range is 5-55)

She is healing up so nicely.  We are so grateful for her life and her wonderful transplant team who take such good care of her.

A friend of mine has a little boy named Jax who is receiving his liver transplant as I type this.  He has been on the list for almost 12 weeks, and they finally got the call last night.  Reading her posts hour-by-hour really brings back the reality of the situation we were in just three months ago.  I'm so grateful for organ donation!  I can't wait to meet the family of Annie's donor someday.

When we went to our clinic appointment on Tuesday (after Monday night's blood draw) I was fully expecting to see the numbers up high again since it seems like every other week they go up and we're back to the hospital.  But thankfully, her numbers were even lower, which is so wonderful!  Annie was very happy!  I hope her body will settle in now.  Her numbers are almost normal!!