December 29, 2012

I keep telling myself I need to sit down and blog but Brynn has turned into such a night owl that she rarely goes to sleep before 12:30 anymore and when she is awake the last thing I want to be doing is sitting at the computer!  She is at her cousin Paige's birthday party right now so it seemed like a good time!  We have had alot happen since my last post!  Brynn has been doing amazing and keeping us all in good spirits with her good attitude (most of the time) and quick wit!  Her pain is completely gone on the lowest dose of morphine which is such a huge blessing!  We were not controlling it before on a higher long acting dose before and needing several break through pills throughout the day.  She hasn't needed any break throughs in weeks now!

The biggest highlight we had was that our family was sealed together in the Cardston Alberta Temple on November 17th!  It is something that our kids have prayed to happen for years so it was a very special day for all of us. My mom and sister got busy sewing three white dresses for my girls and two of  my brothers flew home to be there. It was pretty amazing having our four children walk into the sealing room of this beautiful peaceful place all dressed in white!  There wasn't a dry eye there and we all felt so much peace and comfort knowing we will be together for eternity no matter what! 

The day after the temple , Kevin and Brynn and I flew down to Nashville to meet with a Dr that we heard about and contacted.  We were intrigued with some alternative treatments he was offering that we could do at home in addition to the chemo.  We both felt like it was the right thing to do but were extremely worried to take Brynn that far away from home and the Children's hospital.  Once again - prayers were answered and she did great on our 3 night trip.  We were able to do some sight seeing and had a nice little vacation together!

The last month we have been busy just living in the moment and enjoying each day.  Brynn has no more pain in her back and is feeling like getting out more and more.  Christmas is both her and my favorite time of the year.  We went a little crazy this year with decorations and the number of Christmas trees we had- but it made us happy and brought us a smile!  We decided to shuffle the kids bedrooms around and move Brynn upstairs- so we got busy painting her room and even had someone give her a dresser!  She loves it and is sleeping very well there- too well most mornings- like until almost noon! 

We have had so many amazing things happen this holiday season- once again very humbled and amazed at the generosity of others.  We had not one- but two people that did the 12 days of Christmas to our family.  The kids and even us parents were so excited each day to get the knock at the door and run to see what would be sitting on our steps!  Kevin tried to have our dog catch them but it wasn't until the last day when they revealed themselves that we actually knew who it was.  I had guessed so many people but was completely surprised!  They will never know how special they made the holidays for us when we needed it the most!  We can't wait until next year when we can do the same for someone else!  From people surprising us with a tree in our dining room- fully decorated- to Christmas lights put on our trees outside- to anonymous gifts and generous donations to our family we truly have felt so blessed and thank you will never be enough. 

I had prayed and prayed that Brynn would be home for Christmas and not end up in the hospital and things were looking good.  We told the kids that they couldn't come up until 8:00 to open presents and they did their usual tradition of all sleeping together in Sadie's room in the basement.  Reese came running upstairs at about 7:30 and said " Brynn needs you- she has a nosebleed"  I ran downstairs and she was in tears with blood pouring out.  I tried to control it for about 10 minutes and decided we better go to emergency.  I felt so bad leaving the other 3 while we took off and wondered if we would get home to open presents.  My sister came and took them to her house so they weren't alone.  When we got there I knew we needed to check her counts and was sure she was low and needing a platelet transfusion which means waiting for blood to be delivered from Lethbridge.  Brynn's PIC line in her arm had been giving us trouble for the last 2 or 3 weeks and wouldn't give any blood.  I told them they could try but it wasn't working so they would probably have to poke her in the other arm- which Brynn hates.  I was shocked when it gave blood immediately- and my eyes filled with tears.  It felt like a gift for Brynn so she wouldn't need a poke on Christmas day.  Another Christmas miracle came when they gave us our lab report back and her counts were fine!!! No transfusion needed and we could go home!  We got home at about 10 o'clock and continued on with our Christmas- feeling even more grateful!

Even though I am still sad for my little girl that she has to continue her fight- I can't believe how amazing she is and how much she teaches us every day.  A year ago she could hardly even swallow a pill anymore and I didn't know if she would even be able to take a chemo pill at home.  Now she is taking 15 pills a day- never a problem and she never complains about it.  We are giving her heparin in her PIC each day and changing her PIC dressing each week.  She gets three other shots a week and handles it all like a rockstar! 

We continue to get sad news of other friends from Calgary- it breaks our hearts and sometimes makes it hard to keep our spirits up- to keep finding the courage and hope to carry on.  These other kids have become like family to us and I am sick at the number that are relapsing and not doing well.  This disease has to stop- especially in these innocent kids that have not put anything in their bodies to cause any harm.  We continue to pray for them and to never give up on the miracles that I know do happen in the world today.  These kids deserve it!