Utah trip

We are back! We had a very good time on our vacation and wish we were still on it! It was wonderful to get away from all of the hustle here and just enjoy all of the family and friends that live in Utah. The kids did amazingly well on the drive there and back (thank heavens for a dvd player in the van!). I think they really enjoyed doing something different and being a little extra spoiled with treats and snacks!

Little Kaelyn did have a bit of trouble with her drain while we were there, but not enough to land us in the hospital. She also contracted the Rottavirus somewhere, which we had no clue of until we came home and went to her appointment. But, she is all better from that now and is doing pretty well. We did start her back on chemo this week. Her AFP had jumped to 19.2 from 2.5 a month earlier.

We also got a second opinion from the Oncologists and Primary Children's in Salt Lake City. Wade's cousin in a pediatric oncologist there and he was kind enough to set it all up for us. The doctor there sent an email to the doctor who came up with the original protocol for hepatoblastoma and he came back with some advice. He said that the Irinotecan, which she is currently on, will deffinitely not cure her and once we go off of it the cancer will come back. Which we have evidence of from her AFP going up. So he suggested checking into doing additional chemotherapies - Doxirubicin and Ifosfomide (sp?). These drugs do produce much harsher side effects and are hard on her heart and kidneys. We brought this information back to our oncologists here in WA and they mentioned that these drugs may be to much for her kidneys and weak liver to handle. One of them has to be cleared through the liver and with it being in such a fragile state there is the possibility that it could cause too much toxicity in her body if it is not cleared properly. The other drug is hard and the kidneys and because she is taking immunosuppression for her liver transplant which is also hard on the kidneys it is not an option either. So, honestly, the Irinotecan is her best option at this point. It was still very good for us to get the second opinion so we could feel that what we are doing for her is the best treatment. We will continue to pray that some new drugs and therapies will be developed that she may be able to try. But in the mean while we will continue with the Irinotecan and enjoy our little family.

I am so happy that all of you enjoy our website. It is good therapy for me and provides good information for you. Please continue to send little notes on our guest board. It is always good to hear from all of you!

Love to all,

Angie

Kaelyn doing great

Kaelyn is doing very well right now. It is great to see her feeling good and gaining weight! She has a transplant appointment on Monday and and oncology appointment on Wednesday, so I will try and give you an update after we hear what her docs have to say.

Love,

Angie

No more chemo for now!

To update you all from the last post: Kaelyn ended up not needing the drain change. It started draining again all on its own. They let her go home on IV antibiotics (another nursing skill I get to learn!). The doctors cultured her bile and found some bugs in there they wanted to kill off, nothing abnormal. I think they are just trying something new to see if it will work. So far so good. She really has been feeling pretty good in the last week or so.

Some more good news. Kaelyn has finished her protocol of chemo and we have decided not to start another 12 week course. We are going to see what her AFP does in the next month or two. So, she gets a much needed break! Yeah! If her AFP starts to rise again we will put her back on her treatment, but if not we will have a huge celebration! Wade and I are trying to make the decision whether or not to have the dead tumors removed from her lungs. A chest surgery is really hard on Kaelyn. Her surgeon wants to do the surgery, but her oncologist doesn't think it would be worth the risk. So we are trying to education ourselves on what would be best for her. We have our paperwork in for a second opion from a different hospital and are working on getting the paperwork into St. Jude's Children's Hospital for their opinion and any suggestions. It is a difficult decision so we just want to have as much information as we can before we decide.

We are in the hospital right now for a routine drain change. But we should be able to go home tomorrow.

We are all looking forward to our upcoming trip to Utah. It will be a great break for us all.

Love,

Angie

AFP 7.8

Great news! Kaelyn's AFP is down to 7.8 as of last week. It has never been that low, even after transplant. So we will continue on with atleast one more course of chemo through July. After that we have a decision to make, keep going with the chemo or stop and see what happens. We are not sure what we will decide. We also are considering getting a few other hospitals involved with second opinions and options for Kaelyn's treatment, both with her cancer and her liver issues. I think the extra information with help make our decision. Kaelyn is also back in the hospital right now. We came in on the 4th of July for a fever. She needs another drain change. She also is having some blood in her stools, so we are running a bunch of tests. So far they are all negative. The doctors are thinking that possibly her drain is in too far and causing some irritation in the intestine which may be causing the bleeding. So, tomorrow they will change the drain and we will see what happens.

Love to all. Angie

Routine Cholangiogram

Kaelyn is in today for a routine biliary drain change. And it came no time too soon. She has started to get a little yellow over the past few days and I can tell that the bile is not draining internally very well again. Really though, we can't complain. This has been a record three weeks without any hospitalizations! It is time for a celebration! As long as everything goes well with the tube change we should only be inpatient for one night.

She is such a sweet girl. We love her so much, she is always dancing and singing when she feels good and loves to copy EVERYTHING Jacob does. They are really cute, those kids.

We are planning a trip to Utah the first week in August to visit with all our friends and family. We are all very excited to see everyone. I don't think we have all been to Utah since Kaelyn was 2 months old! I couldn't believe it has been so long. We really can't wait to see everyone again.

Now time for the not so great news. We met with the oncologists last week,they are not hopeful for this chemotherapy to be a long term cure. Though we knew that when we started, but we were more hopeful that we would get a few more good years, possibly 10 or so but they are giving her a possibility of two years left of her sweet life. We will continue with her chemo for as long as her body tolerates it and her cancer is responding to it. Most likely her cancer will become chemo-resistant and it will no longer be affective, though we don't know how long it will take the cancer to evolve to that state. It could be a year or two or it could be a few months. This new chemotherapy she is on is the best out there for her condition. It has provided many children with more time. Before Irinotecan came out the kids only lasted 6 months or so. So we have to be thankful for the blessing of new medicine, it is giving us more time. And who knows, maybe in more time another new drug will be developed. I believe there is always hope and we can always rely on Heavenly Father for a miracle, even if it is in the miracle of peace and comfort. True, last week was a very difficult week for us, our rose colored glasses were removed and we saw this situation for what it is. But we have her now and she is doing really well, what more do we need. Please continue to keep Kaelyn in your prayers. She is such a brave, beautiful little girl. And I know that your prayers are helping all of us.

Please don't let the news get you down. We are all children of God and He will comfort us in our sorrows and rejoice with us in our triumphs. Kaelyn willl be all right and so will we.

We love you all,

Angie