Sunday, October 18, 2009

Sunday night

We had a great weekend with family and friends. What with Aaron's birthday on Saturday and then we had Kayli's dedication at church on Sunday morning. She was so cute in a little poofy dress and ruffles on her bum-bum. She really likes being the star of the show. Our pastor, Dion, , did a wonderful job of the dedication. Here is our family up on the stage promising that we will help Angel and Aaron raise up Kayli with God's word.

We have a great looking family. Kayli is one lucky girl to have so much love surrounding her.

Uncle Will is in the center watching to make sure Pastor Dion doesn't drop his girl.

We had a really nice lunch after church and then people started home. After everyone left, this is what Uncle Will and Kayli did. They just sat outside and were quiet. They both needed it by then.

This last picture is just a cute one. Little Carson, who is now in Kindergarten, is showing Uncle Will a ladybug that he caught. There is many more pictures of the day that I will put up here but the blog is going to be long enough already. So I had to stop with these for tonight.
Now to the tough part of the blog. I want everyone to know that it has been very hard for me to write this blog. I have prayed long and hard for the right words. So here goes.... Will has most of his tests back. One of the first results we got was the reason for his blisters. They are from a blood disease called porphyria cutanea tarda. This has something to do with the way the blood makes the enzymes or oxygen or something like that. It is a enzyme deficiency, which spills out into the blood, and builds up in the skin. Exposure to sunlight causes the blisters. It is very painful but it can be treated with a medicine. We can deliver the medicine when Will is getting dialysis. The doctors just need to figure out which meds to use. They will let us know by the end of the week. So that was good that we found this out and Will just needs to stay out of the sunlight until he gets the medicine.
We were getting ready to leave the hospital when Dr. Cahill's assistant or associate came in with some news. It's not really the news we wanted to hear.
Will won't be able to get his transplant. The reason is because he has been diagnosed with cirrhosis of the liver. The only treatment for cirrhosis is a liver transplant. He can't have a liver transplant because his lungs won't be able to survive that type of transplant. They aren't good enough to stand up to that. Then, he can't have just a kidney transplant because the liver would ruin the new kidney. So all three head doctors, Dr. Cahill, the lung doc, Dr. Shehab, the kidney doc, and Dr. Hutsen, the liver doc. got together and decided that there is just no way.
This was a complete shock to us so we are still letting it sink in. There are many questions that we left unasked for the time being but we will ask them later. If you want to know more about cirrhosis of the liver, just google it. There are some great sites out there.
As you can imagine, we have had a long, emotional weekend of letting the family know. I know there are many people we should have called instead of letting them read this news on here. And I apologize now, but please understand how hard this is for us to tell people that love Will so much. There have been lots of tears shed in our household in the last couple of days. It's amazing how strong my son is and everyone is gaining strength from him. There is no self pity with Will and one of the first things Will said to me was "I feel bad for Dr. Cahill. She worked so hard to get me here today." We left the hospital very quickly then just because Will needed to get out of there and there really was no reason to stay. Will and I talked the whole way home and he was so concerned about how much hurt this was going to cause family and friends.. Once again, how amazing is that????
Some other news is that Tom and I are going in for training to start doing the dialysis at home. We start tomorrow at the dialysis center. The doctors feel that this is the next best treatment option right now. This is going to be so much better for Will. He won't have to go into Twin Falls four days a week. This is a six week course and Will will have dialysis at home for shorter amounts of time--two to three hours a day, six days a week. It will get more of the fluid off and he should feel better. One of the big perks about this is that it is portable and Will will be able to travel when he is feeling better. This is something that he has wanted to do a lot. Will has a few places that he wants to go, and he's going to get there for sure.
I know there are a lot of people that are mad with God right now, just as I was at first. It doesn't seem fair but life is not about fairness. Will can handle this just as he has everything else. He is strong and we know he is in God's hands. Through Him, all things are possible.
We have to remember that God's wisdom is perfect. His plan is perfect. It is our understanding that is not perfect. Sometimes we just can't understand why God does what He does. But who are we to question His will?
Romans 8:28 And we know that in all things God works for the good of those who love Him, who have been called according to His purpose. Aaron gave this passage to Will last night and it just fit perfectly.
Will has a very special purpose that God has given him. Because we love Will, we don't want him to suffer any more than he has, but God will see Will through this, and us too.
I know I have used this before but it is perfect for this blog, so I use it again....
God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.
He has blessed us in so many ways and we want to thank God for all He is doing for us and through us.


T*A*N*Y*A* said...

Wow I have no words right now.. I have to take a moment to process this.. No matter what you ALL are still in my prayers.. Love ALL of YOU!!

Dixie said...

Will, Terri,Tom,Angel,Aaron and Kayli,
I am so sorry to hear the news. I know how much you all were hoping for the transplant. What a shock to hear that Will has cirrhosis of the liver espically since he doesn't cirrhosis of the live is most the time asso. with that.
Will you are such an amazing and strong person. I hope that you and your family are able to do and go where every you want to once your mom and dad become pro's at the dialysis.
Haribison you are all the best and are always in me thoughts are you deal with this difficult new. I love you all.

Dixie and James

Miss W said...

I know how difficult this news is for you all to share. Know that we are behind you every step of the way.

Will is the strongest person that I have ever known. His "will" and determination are unsurpassed. He is the best role model that any of us could have.

God is an awesome God and he gave us Will to remember just how wonderful the gift of life really is and that our journey is not without struggle. A very wise woman once told me that she went through more pain than most because she helped carry the burden for those that couldn't. Will is the epitome of that statement. He has carried the world...

You are always in our thoughts and prayers for healing.

Pam and Dave

Christine said...

Harbison family,
I am so sorry to hear this news. My thoughts and prayers are with you all. Love you guys. <3 Keep your chins up.

Nichole Rammell said...

I am coming to see you next tuesday mid morning, so schedule me in!

Jessica said...

Sending all of our love from Florida!