Saturday, March 24, 2012

Lillian's Heart Birthday and First Biopsy

Today is a huge milestone for us - Lillian's one year anniversary! We are thrilled that Lillian has done so well over this first year. Looking back, we never in our wildest imaginations thought that she would be doing as well today as she is. But we're thankful to be wrong on this one! To anyone who sees her on the street, she looks like a completely normal (if slightly hairy) child, and you would need to see her rapidly fading scars to tell otherwise. I guess the only thing we could wish for at this point is for her to stop communicating via high pitched screams and start talking. But we're certainly happy with the progress she's made. It's hard to believe that this is how she looked a year ago today (at the same time this post was... er... posted).

7-24-11 @ 2:33 PM

vs today:

She's made a staggering amount of progress in the year, matching a normal child's growth more closely than the expected growth of a transplant patient, which is a huge accomplishment. Lillian loves being at home now, and spends as much time as possible making messes (her favorite game is dump the bucket) and playing with her sisters.

Part of the post transplant treatment involves yearly heart tissue biopsies as this is the only way to actually check for rejection. Lillian had her biopsy last week, and I'm thrilled to say she passed with flying colors and no rejection. We do have some concern about her aorta getting a tad smaller around the graft points, but this is typical and just something we will be watching at this point. Overall, we're very pleased. 

While today is a very happy day for us, we're also tempered out of concern for our donor family today. A year ago, they gave us a gift that changed our lives, but one that only came at a time of terrible loss for them. While we have not heard from our donor family yet, and at this point don't expect that we will; we are eternally grateful for them, and hope that the idea of their child saving several others helps them with the pain of this time. In thanks to them, please enjoy again Lillian's video covering her hospital stay.

Finally, I think a big picture dump covering her first year is in order. Some you've seen before (especially if you're friends with me on Facebook), but I can't think of a better way to show how she's grown than to show you pictures of her.

3-24-11 - Up early in the morning waiting for transplant.
In the back waiting to go to surgery
A surgical assistant taking Lillian back
3-28-11 4 days post transplant and not in a fantastic mood
3-31-11 - 7 days post transplant and much happier

4-2-11 - Out of ICU and sitting up in a surgical ward
4-14-11 - Discharge day, Lillian with some of her main nurses
Finally! Going home!
4-16-11 - Lillian has been home for 2 days and is starting to get used to it
4-19-11 - Lillian's first (home) sink bath
5-28-11 - Back in the hospital due to a nasty flu/C Diff
6-9-11 - Look at me, finally a supported stander!
6-19-11 - Lillian being goofy
7-2-11 - One of Lillian's first experiences with the sun (delayed due to sensitivity to sun caused by meds). She reacts like any good ginger should!
Enjoying a bath (now one of her favorite things) later that day
7-4-11 - The girls all dressed up for the 4th.
7-23-11 - One of our first big milestones - Lillian's first birthday!
8-6-11 - Lillian playing with cousin Robert
8-8-11 - Back in the bath again (we do bathe her more often than the pictures would suggest)
8-11-11 - Lillian with one of her cardiologists, Dr. Matthew Files. As always, this is one of my favorite pictures that I've ever taken.
9-23-11 - 6 months post transplant
10-23-11 - I'm always thankful for Lillian's willingness to sit still and pose for a photo, especially since Annabelle refuses to ever sit still.
10-28-11 - At a friends for an early Halloween party in one of Mom's funky outfits.
11-17-11 - Another classic pose
11-22-11 - More of Lillian's playful side
11-30-11 - Look at how that scar has healed
12-9-11 - With little sister Ailah
12-21-11 - It's safe to say pudding is only after fruit snacks on Lillian's list of favorite things
12-23-11 - 9 months post transplant with an early Christmas present
1-13-12 - Lillian's first snow day
1-21-12 - Lillian has consistently awesome post shower hair
2-3-12 - Lillian enjoying the winter sun in our yard
Back with cousin Robert again
2-24-12 - Gogurt, yet another of Lillian's favorite things

3-11-12 - At the aquarium with Annabelle. This was exciting for Lillian to say the least, who threw a fit if we spent less than 20 minutes at each and every exhibit/tank
It's been a interesting first year post transplant. Here's hoping for health and adventure in her second year!


  1. Poignant review; brings back lots of memories of Lillian's INCREDIBLE Heart Journey. Thanks for sharing Andrew and Kathryn. Thank you God for saving little Lillian's life and providing a willing donor family. Please bless both families Lord with comfort and a grateful heart that this child lives on. May she be a blessing and an inspiration to the lives she will touch. With Love, Grandma Carol

  2. What an adorable girl. God-bless you all.

    I have a story that you will enjoy. In the late 1980's and into the 1990's I led the development of the drug Cytovene (ganciclovir)while working at Syntex Research in Palo Alto California. I still remember the moment in my office, it must have been about 1988, when I received a telephone call from my colleague at Stanford, Dr. Tom Merigan. During that phone call Tom suggested that we do a clinical study of intravenous ganciclovir in heart transplant patients. I thought it was a great idea (the drug was being used primarily in AIDS patients at that time) but didn't have any money in my budget to conduct such a study (very expensive). So I spoke with my boss Dr. Bob Roe and told him what a boon it would be to be able to prevent CMV in heart transplant patients, because without it they were dying of CMV infection. Somehow Bob found the money and we began the study, which proved that ganciclovir prevented CMV disease in heart Tx patients. This was published in the New England Journal of Medicine in April of 1992. Besides Bob and Tom, one also deserving of credit is the discoverer of ganciclovir Dr. Julien Verheyden.

    Interestingly, mycophenolate mofetil was also discovered and developed by Syntex at the same time as ganciclovir. I worked on that drug for a short while as well. Lillian is probably on that drug now.

    All the best to you.
    William Buhles
    Davis, CA

  3. Hello William,

    Thanks for your post, I had meant to reply earlier, but never seem to have the time. It's especially insightful to hear about your development of ganciclovir and MMF, as you correctly guessed that she is on the latter. The former prevent the CMV in her donor heart from spreading to the rest of her body (she did not have it at time of Tx), although I admit an unclear knowledge whether it prevented it only during the time she was on it, or if it is still isolated to her heart.

    Thank you for the work you've done. Lillian would likely not be alive without it. The drug companies get a lot of flack these days, but we're well aware that Lillian would not be alive without the many, many different drugs she's been given.