September 29, 2013

I know I keep saying we had a rough week and I'm sorry for the repetition but each week just seems to get tougher.  Brynn had high hopes when we went back to Calgary last Monday that her liver function numbers would be improving as well as her bilirubin so that we could begin chemo.  It was just another blow for her to find out that they were not getting better and chemo was still not an option.  She woke up early Monday morning at 4am and called me and said she felt a bump on the side of her head- right on her left temple.  I told her it was probably nothing to worry about even though I worry about everything.  We showed them and they tried not to look to concerned because they know how Brynn worries.  She's too perceptive though and she knew that it wasn't good.  They told us that her last scans they had seen some lesions in the bones on that side of her head and that now they were probably growing.  It is so disturbing to Brynn every time she looks in the mirror and is worrying about a lump that is visible and that she thinks is growing. 
We took all the kids out of school and brought them to Calgary with us.  They said it would be a good idea.  We were staying in the Oncology Unit (Unit 1) which has become a second home to us.  They brought up again that it would be better for our family to be at Rotary Flames House.  Three years ago Brynn asked me what that place was and I told her that is was for people that weren't getting better.  It is also used for respite care and other things that I didn't know about.  I wasn't worried at the time that we would ever be there or need to go there.  How in the world was I to bring up going over there to Brynn without upsetting her?  They didn't want us at Ronald McDonald House without nurses there and Unit One wasn't set up for families of 6 to stay there- even though they were bending over backwards for us and putting mats on the floor to accommodate us as best they can.  The hospital was at 114% capacity and they really needed the beds if we could be somewhere else.  Rotary Flames House only had one really large room for our family and they were holding it for us but couldn't do that indefinitely.  They also mentioned that we could bring our dog Suri there to stay as well..  We had lots of reasons so it was discussed.  Brynn didn't even want a tour of it and so the decision was made for her mostly by her doctors and nurses.  It felt so yucky to walk over there with all our belongings- a place that I never wanted to set foot in but  knew it was probably the best place to be. Her nurses were so incredible and bought matching sweaters with Brynn and they all wore them as we walked over to Rotary Flames House together.  We love them and they are so good to us and Brynn!
 I was feeling very guilty the first night there and was ready to check back into unit one when Brynn said she hated it there and felt like she was kicked out of the hospital and forced to go there against her will.  Her and I both hate change and would rather stay with what we know.  By day two however we were feeling more comfortable there and could see the benefits there was with more space for our family and being able to come and go as we please with no passes.  They have a chef there and he made a few of Brynn's favorites already- salmon and BBQ ribs with mashed potatoes.  Brynn really enjoyed that!
We really have tried to go out and do something fun each day as a family.  We all went to build a bear which the kids loved.  We went to Chucky Cheese and they played games, went to the mall and are hoping to go to the Science Center this week.  We were surprised when Brynn said she was up for going home for the weekend.  We got home last night about supper time.  We had such an amazing surprise as the outside of our home was all decorated for fall and my sister and family surprised Sadie by completely redoing her room this week.  It was so nice for her as we did Brynn's room this spring and our plan was to do hers this summer - but things have been crazy and it hasn't happened yet.  Brynn went to church this morning and has been doing pretty good.  We had friends bring her favorite thing- Cafe Rio tonight and Grandy brought her favorite strawberry pie.  She started feeling sick a few hours ago and was throwing up and had a headache.  We called and talked to Calgary but things have settled down and she is comfortable and watching Christmas movies with her sister Sadie.  It's so nice to be home- but also we are more nervous to take care of her on our own.  We are heading back tomorrow and have an appointment to talk to the radiation oncologist on Tuesday morning.  They might do one or two treatments on Brynn's head to relieve the pressure and hopefully make the bump go down.  It literally breaks my heart when she sees herself in the mirror and starts crying because the bump and her yellowish eyes bother her so much.  She's as beautiful as always to us but I'm sure it would be distressing to me as well.  We continue to pray for strength and comfort and for the doctors to be inspired to do the right thing with her care.  We pray that we can get all the benefit we can from radiation and with as little side effects as possible.  Brynn is still hoping for her liver counts to regulate and we are praying for that too.  I was asked recently if there was still any hope.  My reply was that there is always hope and we refuse to believe any different.  You have to keep having hope- it's the only way you can get through each day. 
This coming Saturday- October 5th is our beautiful Brynn's 14th birthday.  We pray that she can feel well and we can enjoy spending this special day with our incredible girl<3<3<3