Final Pathology

Dr. Thomson came to talk with us yesterday after the Tumor Board meeting. The pathology report does confirm that this is a relapse of Kaelyn's hepatoblastoma. The good new is that it has not spread back into her liver and it has not reached into her bones, it seems localized in her lungs at this time. The tumors are very small, about bean size. We have really only three choices for Kaelyn's treatment. One, is to do nothing - which is not an option for us. Two is to go through chemo with a drug called Irinotecan that is fairly new and causes horrible diarrhoea, but is hoped to provide less time in the hospital. Three is to hit this very hard with a drug called doxirubin, this chemo would give her many horrible side effects like mouth sores and vomiting and we would also be in the hospital a whole lot more. There seems to be no difference in the effectiveness between Irinotecan and Doxirubin just more side effects and hospital stays. Even after treatment the doctors prognosis is that she has less than a 10% chance of the cancer going away and staying away long term.

Her liver also comes to play in her treatment. They are going to try and place the internal drain today. Hopefully they will be successful. If her liver cannot process the chemo, we will not be able to treat her. Right now though, the transplant docs have said that her function in good and she has a good chance that it will process the chemo. But we have to get the external drain out, because it is a big risk of infection since it provides a break in the skin.

Wade and I have decided to go with the Irinotecan drug. We will see how she does on it and how her liver handle it. The oncologists say that she could be on it as long as it takes to get her AFP down to a normal level (below 10, it's at 48 right now) and to get a couple of clear CT scans. That could be up to a year. We are hopeing that since we have caught it so early that it won't take us that long.

We really want to take a family vacation before we start Kaelyn's treatment. If any of you have any ideas on a place to go that is good for young kids and relaxing, I would love to hear them. We really need to go within the next two weeks though.

I also wanted to mention how much we appreciate all of your prayers and fasting on our little Kaelyn's and our behalf. Yesterday when we heard the results of the biopsy and Kaelyn's options Wade and I felt very calm and at peace with our decision. I know it is a blessing sent from our Father in Heaven. We have a knowlege of our eternal life together as a family and this time on earth is only but a moment of eternity. No matter what lies in our earthly future, our eternal future is bright and beautiful.

Love to all,

Angie

Preliminary biopsy results...

Well, it is not good. From the preliminary pathology report it looks like Kaelyn cancer is back. Her biopsy went as planned, but she is in a lot of pain. I guess anytime you meddle with the lungs, it is pretty painful. She is doing better this morning than she was last night, but deffinitely not herself.

Here is the plan for the next week. She will go in for a chest x-ray this afternoon and if that looks good they will take out her chest tube (that was used for draining the biopsy site). Tomorrow we will just let her rest and recover. Monday she will go through a series of tests to check her heart and kidney function. Tuesday she will most likely go through another attempt to place the internal bile drain. It is imperitive that we get this working. If we cannot get the liver functioning well she will not have many choices for chemotherapy. Most of the chemo used is cleared through the liver. If the liver cannot process the drug it will stay in the body and cause a whole lot of nasty things I don't even want to think about. Also on tuesday the tumor board will meet to discuss Kaelyn and treatment options - the final pathology results will be in by then.

Dr. Thomson, Kaelyn's primary oncologist, stopped in to her room last night and talked with Wade and I. The treatment of recurrent cancer is far more intense and because of this more side effects will come. The treatment will probably take about 6 months to complete. She also talked about how if the liver will not tolerate the chemo, we will not have many options. It was a very hard night last night. But Dr. Healey, Kaelyns transplant surgeon, was a bit more optomistic for the liver. The livers function itself is good. We just need to get the bile draining more adequately to alleviate the inflammation and possibility of infection. So he gave us more hope. She will be highly suseptable to infection and virus' because of her immunosuppression and then adding chemo on top. I am sure we will be in the hospital a whole lot more this time around.

There is so much information that was given to us. I will update as often as I can to keep you all up to date on her progress. This sunday, March 6, we will be holding a special fast for Kaelyn. If you would like to participate. Please keep Kaelyn in your prayers. I know that God lives and he loves us. I also believe that miracles still exist and can be granted if it is His will. This is my prayer, that Kaelyn will be given a miracle from her loving Father in Heaven.

Love to all,

Angie

Biopsy Scheduled

Kaelyn's lung biopsy will be on Friday, March 4. They are also going to try and place the internal bile drain at that time.

Love to all...

Angie

Latest CT Scan news...

Kaelyn went in for a CT Scan today. Unfortunately they saw two little nodes on her left lung that were not there before. The plan right now is to do a biopsy and see what the results are. I don't know when the biopsy will be done, but I am thinking it will be soon - probably within the week.

Her AFP (alpha-feta protein) levels have been going up, which is a sign that this may be a relapse of the lung metasteses. Please keep our angel in your prayers.

~Angie

Update on Drains

Well, unfortunately the internal drain was not able to be placed. Kaelyn's bile duct walls are too thin in result of the inflamation and a possible infection. The external drain is still in place and they will retry the surgery in a few weeks after her ducts have a chance to strengthen up. If they are still not successful with the interventional radiology method (inserting the tube with the guidance of ultrasound) they will possible do a more invasive surgery to try and place the drain. Hopefully the next time around all will go well.

We have been in and out of the hospital a lot in the past few weeks for various reasons, but Kaelyn is doing very well. She seems to feel pretty good. And she looks awfully cute carrying around her bile bag in a pretty pink Hello Kitty backpack! What an amazing girl she is!

She also is featured in an ad campaign for Seattle Children's Hospital. Her mug is on the home page of www.seattlechildrens.org. If you click on the link next to the picture it will bring you to a larger version of the photo. The man with her is the head of the transplant program at Children's and is very involved with her care. It was pretty fun have her in her first "model" shoot! She is deffinitely a natural, as long as her pacifier is alon for the ride!

Love to all,

Angie