Sorry it took me an entire week to write more, but with Christmas and everything... you know how it goes. First I just have to say how touched I am by all of you and your sweet comments and your constant prayers in our behalf. We feel so loved and so cared for by everyone we know and I can't tell you the difference it has made knowing how much love and support we have from so many people. Please know your prayers for Taylee have made a miraculous difference. Things could be so much worse for Taylee in so many ways, but as of now we have only gotten the very best of results and know we have our Heavenly Father to thank for that wonderful wonderful blessing. He has heard all our prayers and has been so quick to answer them so thank you all for making such a big difference in Taylee's life and in ours.
We got out of the Children's Hospital in Seattle last Sunday which was a surprise and a blessing to be able to come to my mom's. Taylee quickly started acting more like herself, but on Tues. we had to go in for doctors appointments and her first chemo infusion. The combo of being at the hospital from 11:30am to 5:30pm, no nap (which she desperatly needs now), no lunch (just snacks because we were in and out of waiting rooms all day) and all the drama she went through that day made it a very rough day for all of us. I thought if Taylee was going to be like this every day from now on I knew I couldn't handle seeing her that upset and in pain. Luckily with a good nights rest she was acting more and more like herself the next day and even better the day after that. The thing is, chemo does a lot of damage as it is doing its job. The chemo makes her constipated and nausous so she has drugs to help with that, but I just feel like we pump more and more stuff in her trying to treat symptoms for this with that, but then that drug causes this and it just isn't fun. I am sure we will get the hang of all this and know when her good days and her bad days are and how to best help this pain or problem with time. I guess I probably haven't even said yet that her surgery was amazing. They didn't find a trace of the cancer anywhere else in her body. It did not go outside the lining of her kidney and they didn't even see it in her lymph nodes which is such a blessing. They still do chemo more as a preventative measure just in case there is like a microscopic cell they couldn't see. We need to be sure everything is completly gone so we won't have to ever go through this again. She will be doing chemo for 6 months and then she should be done with all this so we just keep praying for the best results. They say she will most likely loose her hair, but my sisters are already telling me about all the cute hats they will get her so she can still look girly! We are still at my mom's right now, but are hoping to get to go home in the next few weeks. Depending on finances, the best thing would be for us to be able to do her chemo in Rexburg at the oncology center there, but the next option will be for us to drive to Salt Lake Primary Children's once a week for chemo their because they have the same kinds of programs that the Children's Hospital has here in Seattle, but at least then we could live at home. There are a lot of things still up in the air right now so we will be sure to keep you updated. Thanks again and again for everything. We love you all.
Saturday, December 20, 2008
Today was another big day for Taylee. This morning she got to drink juice!! Then this afternoon more clear liquids like jello and soup (yuck) and now she has pizza sitting here waiting for her when she wakes up! She is now officially tube-less. They turrned off her epideral earlier today and switched her to oral pain medication and then when they saw that it was taking care of her pain efficiantly, they took the catheder out. Next, out came the foley (pee tube) and last was her IV! The worst of it all was removing the extremeley sticky tape that was holding all those tubes in place. That hurt her, but she is doing fine now. They are still tracking her heart rate and breathing so she has a few wires on her still, but no tubes! I asked my nurse today from a surgical perspective if Tay would be close to being ready to go home if they were just waiting for recovery from surgery and she said she would be super close. They just want to watch her on this pain medication a little longer to be sure it does the job and she needs to go #2 (sorry if that was too much info) but it is all those little things that move us closer to getting her to a place she feels more safe and comfortable. They also want to make sure she is handeling solid food ok and then from thier stand point she is good to go. Unfortunaltly we have the oncology team that also has to give the go ahead and they haven't gotten all her test results back yet that tell us exactly what they still want to do with her and those won't come till Monday so we will probably be here at least until then. If she does need chemo we are kinda hoping we can start it after Christmas, but if you ask grampa he says she won't need it! Wouldn't that be another major miricle! We are so amazed at the Lord's hand in our lives, especially at this time and feel so blessed by Him. I will try to post again Monday when we hopefully have more news! Thanks again and again to you all! We love you!
Thursday, December 18, 2008
Well everyone, sorry it took me until today to let you know that Taylee's surgery went so amazingly well! The surgery only took 2 hrs and they were able to remove the tumor in one clean piece meaning they didnt see any evidence of the cancer bursting outside the kidney lining. They are never 100% sure until we get the pathology back but as far as they could tell everything looked good and went good. Taylee is doing ok. She is scared, but they have an ephideral (sp?) in her and a little morphine too so I don't think she is feeling too much pain right now. I just want to hold her but it is a little tricky with four tubes hooked up to her. We are just waiting for a few things to happen; she needs her bowls to start working again because they kind of go to sleep after surgery. When that happens, the tube down her nose can come out. Next, out will come the ephideral, then her folly (sp?) or pee tube, and last out will come the IV. They are saying recovery is about 5-7 days so we may even make it home for Christmas! Thanks again to you all and please keep praying for a speedy and completely healthy recovery. We will let everyone know when we have heard about any further treatment she will need. Love you all!
Wednesday, December 17, 2008
I am sure most all of you know by now that our sweet little Tay was diagnosed with cancer last Wed. They are pretty sure it is Wilm's Tumor which is a cancerous tumor on her kidney. It has grown rapidly in size and is just a little smaller then a canteloupe. She is in surgery as we speak. They started her sugery at 3pm and is estimated to last about 3 hrs but could go up to 7hrs. Everything is looking good for her. As far as tests show the cancer looks as if it is still contained inside the kidney which is great and hopefully they can remove the entire thing (including her left kidney). They will also take out the surrounding lymph nodes to test them and they will help them determine what further treatment (chemo) she will need if any. When she gets out of surgery I will try to post again letting everyone know how she is doing. I really want to thank everyone for their thoughts and prayers in our behalf and we have felt so much peace and hope throughout this whole process and I know that is because Heavenly Father is very aware of Taylee how could He not be with all the people talking to Him about Tay. We love you all and thank you again for all the support.
Saturday, December 6, 2008
I was so looking forward to finally being able to decorate a house, little did I know that it would take me four days to do it! Not because I have a lot of stuff cause I realizd as I was taking stuff out that I do not have much, but because of things like lights not working, Taylee and too much other stuff to do. Now that it is done, I must say I love having it up. It makes it feel like Christmas time and Tay gets excited too. I was able to do most of the tree myself becasue Taylee actually took a nap!! But I did save a few things for her to put on and it took her forever to choose where she wanted to put them and it couldn't be where I suggested, the joy of the independant two year old! She even keeps reminding me that this is her Christmas tree (meaning she should be allowed to touch it) and I tell her yes, but the decorations are still not to play with! Anyways we are loving this time of year and are so excited to see family and friends when we come to Washington. Hope everyone is enjoying this Christmas season as much as we are!
P.S I think I am finally ready for a fake tree, I love the real ones, but want it to look perfect and that doesn't really work out!