October 3, 2004

We are still waiting for an organ. We are now on day 25 on the list. Wade called in to our transplant coordinator just to see what the longest wait time has been for someone who is a status 1 on the list. The answer was 2 months. So, we are still trying to wait patiently.

Kaelyn did have to have her 6th course of chemo administered last Wednesday and Friday. We all are a little sad about that. She was doing so great being off chemo for 6 weeks, but it had to be done so the cancer would not progress. She will have to have different chemotherapy drugs the next time she needs it because her kidneys cannot handle any more of the cisplatin she was currently on. The new drugs will have different side effects, the major side effect is that they are hard on the heart. Hopefully she will only have to have one course of these drugs and that won't be an issue. She currently is doing okay. So far she has been eating and keeping food down, thus she has been able to take out her NG Tube (feeding tube). That has been so wonderful! She is so much more free without that thing hanging out of her nose and connected to a big bulky bag. As long as she keeps her weight up we won't have to put the tube back in.. She also is trying so hard to walk. She has taken a couple steps by herself, but is still very wobbly. Probably due to the fact that the chemo makes it so she cannot feel her feet.

Other news, Jacob was exposed to chicken pox last week at preschool. He has been vaccinated, but Kaelyn's doctors don't want to take the chance of her getting exposed. So Jacob will be staying with my sister-in-law, Adele, for a week. If Kaelyn is even around someone carrying the virus she has to go into the hospital in isolation and be administered antibiotics and chicken pox vaccines. I guess chicken pox can be very serious, even deadly, if a immunosuppressed patient gets it. So we are not taking any chances. Jacob thinks he is going on vacation though. There is no better family than Adele's, so he is in good hands. He also just adores his cousins. He says in his prayers EVERY night "Thank you for Maddie and Callie" (Adele's youngest daughters, Jacob's cousins) over and over again. He is going to have a good time. I must admit though, that it will be harder on me not having him around, I already miss him and he hasn't even been gone one day! He is my sunshine!

Well, the wait is definitely hard, I can't get around that. But we know we are in the Lord's hands and things will work out according to His will. We have been greatly blessed and comforted - that has not changed. We love you all.

Love,

Angie

September 20, 2004

Hi All,

I know you are all wondering what is going on here with Kaelyn's transplant. Well, we are still waiting for an organ. It is now day 12 on the list. The median wait time is 11 days, so we are thinking it should be anytime now.

Actually the wait time has been fairly enjoyable. Kaelyn has been feeling really good, since she has not had any chemo treatments in about five weeks. It has been so fun seeing her explore and push her little boundaries. She is finally sleeping through the night! Yeah for all of us! She is starting to scoot her little bum to get around, following in her big brothers footsteps (or should I say bum scoots!). She still would prefer to be held or walked holding onto someone's fingers, but it is a start! She loves to sing! It is so cute! Her favorites are "Patty Cake" and "Head, Shoulders, Knees and Toes". Her words are not distinguishable, but we can tell what song it is with the accompanying hand movements. She also is songwriter, singing some extremely cute original compositions.

Jacob is also growing so quickly! He told me yesterday that after he is done being a big boy, he is going to be teenager. AHHHHHH! I don't know where that came from! He also said that Heavenly Father made his best friend Jacob (yep, same name, different boy) just for him so that they could play all the time together. I love hearing the things that come out of his mouth! He loves preschool and going to primary at church. (His best friend, Jacob, attends both the same school and same church!)

I will definitely update the website when we hear the news that an organ is available. In the mean time, we are just going to enjoy our beautiful children and wait for that phone to ring.

Love to all,

Angie

September 9, 2004

Kaelyn is now listed on the UNOS (United Network for Organ Sharing) list for her liver!!!!! We found out at about 5:00 PM last night! We are all so relieved and excited that she finally is listed to receive her organ.

She has a window of about two weeks to receive her transplant. If we cannot get an organ before then, she will need to have her last course of chemo administered, and that means either having her transplant with dangerously low counts, or having to wait once again. And she will also have to try different chemotherapy after surgery, which we do not want. We ask all of you to please pray that a suitable organ may become available for Kaelyn within this two week window. We have all seen what the power of prayer has accomplished so far. Please continue to keep our Kaelyn in your prayers. We also would like prayers said for the family of whomever our liver comes from. Please ask for comfort for them, we know it will be a sad time for their family.

Love to all!

Angie

September 8, 2004

Okay, our life is one rollercoaster ride after another! We heard yesterday afternoon from our insurance company. They have decided to let us stay here in Seattle for the transplant! Hooray! I believe that the power of prayer and everyones sacrifice in fasting has brought this wonderful news to pass. WE ARE STAYING!!!!!

Also, Jacob has started preschool today. He is so excited. And I am excited that we don't have to pull him away from his friends, family and school. Hopefully we can keep his life just as normal as possible. He is such a good boy. He is always wanting to help and saying the cutest things!

Thank you everyone for your prayers and fast. We love you!

~Angie

September 7, 2004

Hello to Everyone,

Our insurance agency contacted us on Friday evening. They have denied our appeal to have Kaelyn's surgery in Seattle. Our surgeon here at Children's in Seattle believes we should continue to fight by going to the legislature and senate. Wade and I have decided that we are just too emotionally spent and could not handle anymore wait for our baby to receive the medical care she so desperately needs. So, Kaelyn and I are flying to CA on Wednesday evening(September 8th). Wade and Jacob will join us the following week.

I am in the process of trying to find a place for us to stay while we wait for a spot to open up at the Ronald McDonald House. I did receive a post in our guest book from a friend who actually lives very close to Palo Alto. So that may be a possibility.

Kaelyn and I will meet all the doctors on Thursday and possibly go through a few more tests. Then, hopefully, she will be able to be listed for her liver. After that, we just wait until an organ becomes available. I guess there really is no better place than sunny CA to wait for an organ! We are going to do some sight seeing and definitely go to the beach.

I believe that Heavenly Father is looking out for us and we will be in the best place possible for Kaelyn's transplant. We have put it into His hands. We wanted to say thank you to all of you who fasted for Kaelyn this weekend. I felt the spirit extremely well on Sunday and since then, things have been falling into place. His power in our lives is amazing and the strength I have received is what keeps me going.

Love to you all...

Angie