Port-a-cath is gone...3rd Birthday!

A couple of weeks ago Kaelyn started having really high fevers, 104 degrees. I took her in to the hospital and they ran some blood cultures. The result was that her port-a-cath was infected with staff and strep bacteria. It was not responding well to the antibiotics so in she went to the OR to have her port removed. This is not something that we wanted, but it had to go. This was the only way to clear up the infection. The surgeon said that they removed about 8 cc's of puss, which is almost two teaspoons full. They were pretty surprised that it was so infected. Because of this they could not close her wound. We need all of that infection to come out. We stayed in the hospital for about 8 days and went home with a PICC line (a peripherally inserted central catheter) in her arm so we could continue the IV antibiotics at home for another 10 days. She also came home with an open would were her port was removed. We have to change the dressing and repack it once a day with antimicrobial packing. It is starting to heal and look better. She still is not feeling well though. She is complaining of pain constantly. So I have a call into the docs to see if we can help resolve or atleast find out what is going on. She needs some relief...

On a more happy note! Kaelyn had her 3rd birthday on Thursday! It was very exciting. She had a barbie princess cake and all of her grandparents and many of her other family here! She was so excited about the scooter she got that she did not want to come back inside to blow our her candles and have cake and ice cream! It was so cute!

Love to all,

Angie

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