January 3, 2005

I need to apologize for not upkeeping the blog over the month of December. With our move and all of the holiday hustle and bustle we just didn't get our computer up and running until this past weekend.

Over all though it has been a wonderfully uneventful (hospital) month for us. Kaelyn has not had to be admitted to the hospital for almost two months. She is doing so great! Kaelyn herself has not been uneventful though. She has learned to walk!!!!! What a wonderful Christmas present for all of us! She is just toddling around now, getting into anything and everything. It is so cute watching her short little legs shuffle around. What entertainment! She also has been working on a head of hair. It seems to grow some every night! Her eyebrows are dark and very full and her head hair is, I think, going to be a light brown color. She looks so great! She also has surprised all of her physicians. On her last clinic visit Dr. Healey confided in me that he thought she would be having serious problems by now with the bile ducts. He figured she would be having infection and jaundice and be heading for her second transplant by now. But, as far as we can tell at this point she is well. Her labs are stabilizing some, still high but not climbing any higher and her health has been amazingly well. So, for now the plan is to still have her listed but not accept any organ offers until something changes in her health or her labs start to sky rocket upward. That was wonderful news to us! It sure has been a good month. I believe that we have been blessed with the miracle of a little more time. What a blessing!!

Jacob sure has had a great time having us all together too. We all had a marvelous Christmas. I think we all needed the time to be together without the looming threat of hospitalization. It was just wonderful. We also are just loving our new home! It is so great that Adele (Wade's sister) lives just two doors down. The kids are having a great time with their cousins and I love having the company during the day. It is also very comforting knowing that Adele is their to help us when the times get tough. She is wonderful!

I hope all of you had a great Christmas season. We sure love you and I am going to try to keep the site updated more often now that we have our computer up again.

Love to all,

Angie

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Kaelyn is Re-Listed

Kaelyn was placed back on the Organ waiting list on Monday, November 30. Now we will just wait until a suitable organ comes available.

Kaelyn is finally starting to roll over all by herself! She also has learned how to get herself into a sitting position from being on her back! It is so cute and wonderful to see her finally able to use her body like a little 18 month old should! It has been really fun with her the past few weeks. She feels so good. It kindof makes you wonder why she needs to go through another transplant. But I do know that she will only get sicker and sicker the longer we wait. That is why we want to get the surgery done before she gets to that point.

More good news. This weekend we are moving into our own house! We are moving to Snohomish into Jim and Adele's (Wade's sister) old home. They have just bought a new home two doors down and we will be part owners in their previous home. It will be a good situation. We will be in our own home but still have family really close. Just in time for Christmas!!! Our new address is:

810 21st Pl.
Snohomish, WA 98290

I don't have our phone set up yet, but will post it when we get our new number.

Love to all,

Angie

Re-Listed

Kaelyn will be relisted on the National Organ Transplant list on Monday, November 29th. Dr. Healey feels that it will be inevitable that Kaelyn will need a second transplant. It is better to get the surgery done while she is well, then to wait until she is sick. I agree with him. It also is better to do the surgery before scar tissue begins to build too much from her previous transplant. Atleast we have time on our side this go around. She is not sick like she was before and her cancer is no longer an issue. So, the surgeons are going to be very picky on what livers get offered to her. So, hopefully we can avoid any further complications with the new liver.

I hope everyone had a great Thanksgiving. We really enjoyed the time with our family and giving thanks for our many blessings. We continue to see God's hand in all of this, Kaelyn's remission from cancer is a miracle in its self.

Scan results

I had forgotten that I didn't update the website with the latest CT Scan results, so the last post is a little out of order.

On the cancer side of things, Kaelyn has been pronounce cancer free!!!!! That is reason enough to celebrate! The scan showed no signs of cancerous cells anywhere in her lungs or new liver. Oncologists and Surgeons are still disagreeing on whether to give Kaelyn any further chemo. The oncologists seem to feel that there is no need, while our surgeons think that it would be a good idea just for precautionary measures. I think they are going to give Kaelyn at least another month to recover from surgery before they make their final decision. But for now, we are celebrating the fact that Kaelyn is in remission!

The results from the liver portion of the scan are not as promising. Her hepatic artery is in fact clogged and the part of the liver that contains the bile ducts is not receiving adequate blood flow at this time. In result of this, the bile ducts are beginning to clogg, which could result in scar tissue and infection. Like I said in the previous post, this may lead us another liver transplant. There is the chance that her liver could compensate for the inadequate blood flow with the working portal vein. There has been some cases where the liver functioned normally without blood flow from the hepatic artery. This is what we are praying for. But we are preparing for another transplant. Our doctors are preparing the necessary paperwork and bloodwork to relist Kaelyn on the National Organ List.

Let us all celebrate in the fact that Kaelyn is atleast Cancer free. That is a miracle all in it's self! And right now at this moment she is feeling healthy and well. We definitely have many things to be thankful for during this holiday season. Love to all.

Angie

Kaelyn had to be readmitted last week for diarrhea and vomiting. We think she just had the stomach flu. But because of her clogged bile duct, the doctors wanted to make sure she didn't have an infection or was going into rejection. After being in the hospital for 5 days they finally let her go because all of the test were negative. Thank heavens!

We do have some not so great news though. The surgeons are considering relisting Kaelyn for a second transplant if the blockage in her bile ducts do not correct themselves. Normally they could place a drain and the ducts would usually clear up and start functioning properly. But because of the thrombosis (clot) in her hepatic artery, they don't believe that the drains would be a permanent solution for the bile duct issue. We basically are just waiting to see if her liver will some how compensate for the loss of blood flow from the artery. Dr Healey, our surgeon, has said that is some cases this is possible. So please pray our girls liver to be able to compensate for this.

Thank you all for your love and concern. We will keep you updated.