We are all moved and settled here in the Seattle house. We affectionately call it our "summer home". Sounds posh, doesn't it? Kind of makes a bit of fun out of a serious time in our lives. We are so grateful to the many generous folks out there that have contributed to the Anna Houston Trust Fund (aka. the Stick Together Trust) as this is what has made it possible for us to be here. The Lord has blessed us with a great place! I couldn't ask for a better location!!!! Only four miles from Children's and six miles to Seattle Cancer Care Alliance. Also, there is a beautiful park just across the street with a playground a little further, but all in walking distance! Life in Seattle is getting into a kind of routine with school, play time, and doctor's appointments. It took almost a week to get our internet service hooked up, and then we have been "running" ever since! So now, I am finally getting a chance to post though my computer seems to be acting up a bit- thus the lack of pictures!
We started intake again on Tuesday, meeting new doctors and getting the typical blood work done, etc.. The doctors, physician's assistants, and others have a four week rotation so we don't always get the same people, however, Dr. Woolfrey, who has been with us since October, will be on her Children's rotation this month, ensuring us that she will still be in charge of Anna's care even in the hospital! We are thankful for that! Our schedule changes daily. In fact, the date of transplant has changed about four times in the past week or so, and we didn't even know it! We did know of one change, but then found out it had changed two other times! Also, the intake schedule changes so often that we are constantly checking in to see what we will be doing next! In fact, yesterday, the intake schedule changed three times in one day!! It can be a bit frustrating until you get it all figured out, then you get used to it. Really. You do! We rejoice in that intake is very abbreviated this time! We actually only had appointments Tuesday and Wednesday this week and then we return on Monday for a FULL day of appointments. Tuesday next week looks open....but that can change! And then Wednesday Anna is scheduled to get her Hickman (or central) line put in. This is a surgical procedure done at Children's. Thursday evening she will be admitted and Friday she will begin conditioning (chemo). The transplant day is on the 17th. Transplant day had been set for the 17th, changed to the 15th, then to the 20th, and then back to the 17th.
Anna's liver is a bit confusing but I will try to explain to you all what is going on. Back in January, Anna's liver enzymes and bilirubin were elevated considerably. Our theory (with which the doctors agree) is that this happened as a result of the imatinib (Gleevec) still being in Anna's system, and then nilotinib (Tasigna) suddenly being put into her body, causing toxicity for her liver. The nilotinib is most known for liver problems. Anna was only on the nilotinib for 14 days. Then we gave her a four week break from the TKIs (cancer drugs). During this period of time, Anna's liver enzyme counts went down. Anna got put on dasatinib (Sprycel) as cancer cells will start increasing after four weeks off, and Anna's bilirubin remained slightly elevated. The enzyme numbers tells us that her liver had been swollen and something was definitely wrong. The bilirubin, though important, is not as concerning as the enzymes. Especially since the numbers aren't too terribly high. Now Anna has been off of TKIs completely for two weeks and her bilirubin (which started to increase while on our delay of transplant) has seemed to stabilize in a slightly elevated state. Normal would be 1.4, January they were 3.1, and now they are at 2.6. Monday, the doctor will be meeting with the GI doc to see if we can get the go ahead to continue with transplant. So again, anything can change. They are pretty confident that we will get the okay. All of this is so terribly important because the chemo drugs attack the liver. In fact, most patients do have liver problems as a result of the chemo, but it should get better. Some patients end up having liver failure ending in death. This is the reason for taking care to make sure Anna's liver is at it's best BEFORE starting chemo. We asked if a liver transplant was possible if liver failure occurs, to which the very somber answer, No, was given. Of course, tears filled all of our eyes at this point. We know that this is all very serious and that there is no guarantee of Anna surviving here with us. It is at appointments like these that those reminders are vocalized. Very sobering. We are confident that Anna's life is in God's hands. We know He cares for her even more than we do! And He promises to heal her! Even if it is with Him that she is healed. But we are still hopeful. Many have said that 85% is an awesome chance! To which Craig lovingly replies, "yes, it is if you are a politician winning a vote. But if you take 100 people and put them in a room then tell them that 15 of them will not be leaving the room alive, well, the odds somehow seem not so good anymore." And that, my friends, is what we are dealing with. But God is the great physician and can heal our sweet girl and give her a full life here on earth if He so chooses. We pray selfishly that that will be the case. I personally pray that God will allow her to grow up and marry a godly man and have many children and live to serve God faithfully. But I know that His ways are higher than my ways, His thoughts are higher than my thoughts. And we will trust Him no matter the outcome! God is good all of the time! Blessed be the name of the Lord!