Finally listed!

On Monday of this week Kaelyn was finally re-listed for her second liver transplant. Hooray! It is so funny to look at the difference in emotions from the first time she was listed to this second time. The first time was so stressful and frightening. This time I am so relieved and happy. Anxiety is always a part of waiting for the day to come, but it is less this time. I know what to expect and how to handle the recovery and medicines.

Wade and I have also decided to dual list her in California. This will hopefully decrease her wait time. Kaelyn and I are heading to Palo Alto, CA next Wednesday and will stay until Friday. We will meet with the whole transplant team there at Lucille Packard Children's Hospital and get her listed there also within the next week or so.

I do hope that her transplant happens close to home, but if an organ becomes available in Palo Alto than we are there in a heartbeat.

Well, love to all.

Angie

Wonderful, fantastic news!

No Cancer!!!!! Kaelyn's biopsy went well, the pathology of the nodule removed was that it was not hepatoblastoma. It was a lymph node that was enlarged probably due to the RSV that she had last month. It also was not in the lung, it was located on her diaprahm. That meant that she did not need a chest tube after surgery, so her recovery time was much quicker. We were in the hospital for 8 days though. They placed a second bile drain which has helped her immensely!

So, wonderful news! We are so very happy after our two weeks of extreme worry. She is doing very well right now. She is home and happy! She most likely will be listed for her retransplant on Monday of next week. More good news!

Love to all,

Angie

CT Results

Well, yesterday afternoon I got a call from Dr. Healey, Kaelyn's liver surgeon. He told me some not so great news. There are three new nodules in Kaelyn's right lung. The last one's were in her left lung, it is still clear. She is going to have a needle biopsy of the nodules tomorrow so we can determine what they are. But I think we all know what the pathalogy report will say. This is the nature of hepatoblastoma, it comes back. We should know the results by friday at the soonest.

So the re-transplant has been put on hold until we know what is going on.

Please just keep Kaelyn in your prayers. We all could use a little heavenly comfort right now.

Love to all,

Angie

Going to be re-listed!

Well, our meeting with the transplant surgeon and liver specialist went really well yesterday. We said that we thought it was time for Kaelyn to be re-listed and they agreed! Wade and I were all ready for a battle, but it did not happen. We were so relieved. She just needs a few screening tests in the next couple of weeks and then she will be listed. It is exciting to be over the first phase of waiting, now we are going into the second phase of waiting on the list. She will not be as high on the list as she was the first time around, so it may be a few months (possibly 6 months or so) before she can receive a transplant. But, she honestly is doing very well and I think she can make it that long without too much difficulty. We will just keep going in for her drain to be changed out as often as needed during this period of waiting. Of course we will still be checking her AFP about once a month to screen for any cancer cells that may be growing. So far so good on that front though. Her AFP has remained stable at <.8 for three months. YEAH!!!!

Anyway... We appreciate all of you for your prayers and notes of concern and encouragement over the last two years. This website has been very cathartic to me. I love to read your notes on the guest book, so keep on writing!

Love to all of you,

Angie

Newest update...

Kaelyn unfortanetly was in the hospital for the last days with RSV. It's a respitory virus that is very dangerous for little children (under 3 years). She has a very high fever and a wheezy cough. But we are home today and she is doing much better.

We are going to start her on some nutritional IV feeding probably next week. She is just not growing and gaining weight as she should. But, I don't think that will slow her down! We are talking with the transplant folks on Monday about relisting her. So, that will be a big day for us. Hopefully all will go well and she will be relisted for a new liver within the month.

I thought that everyone would like to see the latest portraits that Kaelyn had taken. So here they are!

Love,

Angie