Goodbye Hospital!

We had such a great time at the zoo on Friday.  We had only been discharged from the hospital about an hour before arriving.  Kaelyn really enjoyed seeing all the animals.  It made me so happy that we could spend a night doing something fun with Kaelyn and family, and for free.  It was an amazing experience seeing all the children with medical needs just enjoying their time at the zoo.  I think the animals knew these kids were extra special because they were all putting on a good show!  I've never seen so much action at the zoo.  It seems like most of the animals are usually just sitting around, sleeping, or eating, but they were quite active, and interactive, while we were there.  An especially exciting time was watching the tigers (fight? play? mating ritual?).  Whatever they were doing, it was fun to watch!

Today Kaelyn has been pretty tired and a little moody.  She is very particular about who can hold her because she doesn't want her tummy hurt.  We have to be really gentle about how we handle her.  The last couple of days have been really difficult to look into her eyes.  They aren't the same.  They have dark circles around them and are sunken in.  Since the surgery she has also lost weight and is very fatigued.  I hate that when I look into her eyes, even when she has a smile on her face, it hurts my heart.  I want to be able to look past the sickness in her face.  I'm sure this is all a result of the surgery, but it just reminds me of what is to come.  It reminds me that I need to be STRONG for Kaelyn, and for the rest of my family.  I have complete faith that we will get through this, but I am nervous for the "getting-through it" part!  I know that my attitude and faith will directly affect Kaelyn, and I want to be a great mom to her when she is going through this.  I know I've said and said this, and who doesn't love their child, but I just love this girl!  She has already given me so much strength in just the last 10 days!!

Rewinding just a bit though, Kaelyn's last day in the hospital went pretty well.  Again she refused any medications, but handled the pain pretty well.  It really is hard to not be able to take that pain away from her.  Not even kisses help the pain :(.  She continued to eat and drink well, though, which is what eventually got her out of there a little earlier than expected.  The last day in the hospital meant removing the remainder of her bells and whistles.  The simple things were the leads and IV lines connected to her port.  The stuff she hated were the adhesive bandages and Huber needle, which was in her port.

We did fit in a lot of play time for her last couple of hours there as well.  Kaelyn was getting so used to having her little mobile IV and medication stand constantly by her side that she started pushing it along to wherever she wanted to go.  It was kinda funny, especially since it is about 3 X taller than her!  Here are a couple pics in the playroom:

We returned to Kaelyn's room and found a bouquet of blue sugar cookies!  Thanks to Josh, Liz, and family!

Just before leaving the hospital, we were able to meet with Kaelyn's oncologist again.  She was able to better explain to us the few results she knew of the pathology that was done in Salt Lake.  I explained it a little bit before in a previous post, but I understand it a little better now so I will try agian!  We were told that the majority of the cells found in the biopsy were identified as Wilm's tumor.  There were some other cells, though, that were not as they expected.  They believe these cells were teratoid cells.  Teratoid cells are immature cells that can become any other cell.  So, Kaelyn's pathology results showed what looked like bowel tissue where there should have only been kidney tissue.  Primary's sent the specimen on to another pathologist in Houston to verify what they saw.  If these truly are teratoid cells, that would mean Kaelyn's diagnosis would be Teratoid Wilm's tumor.  This is still a very treatable cancer.  The only problem is that it is VERY rare.  The oncologist did some research and was only able to find that there were only about 80 documented cases ever, with only about 25 of them being studied.  The majority of these cases turned out fine, just as a regular Wilm's tumor would with treatment.  The only downside is that there is just such little experience with this type of cancer, and they don't know exactly what to expect, like they would with a typical Wilm's tumor.  So, the plan now is to wait until next week when the pathology report is finished in Houston.  If it comes back as teratoid we may end up having to do chemotherapy in Utah.  There is still a lot that is up in the air, but when I know I will update!  I still feel really good about things.  Kaelyn has proven to be such a trooper.

Keep those prayers coming!  Thanks to everyone for your love and support.  Hopefully I'll have more updates sooner than later.