September 4, 2013

Once again I have been thinking about posting on the blog for the last 2 weeks but couldn't make myself do it when I would actually find the time to sit down.  First of all our trip to Connecticut was amazing!  We flew into New York City and my brother only lives about an hour from the airport right on the border of New York and Connecticut.  The flight there made me nervous as Brynn was having nerve pain down her right arm and I had to squeeze her elbow for alot of the flight.  She discovered it helped to hold there I guess on a pressure point or something.  I was a little teary because I was so nervous to be that far away- but Brynn insisted we were going no matter what so I was just constantly saying a prayer that things would work out.  Amazingly they did!
We did so many things that I really can't believe it now!  We went shopping to a huge outlet mall, went to New York City and Time Square and even went and got her first pedicure all together!
 We went to the Broadway show Wicked and got to meet the cast after.  Brynn was so excited to go backstage and they even took us on the stage!  We went in the main actresses dressing rooms and even got to try on their tiaras!  We went to the American Girl Store which has been on Brynn's list for a few years now.  It was huge- 3 stories tall and she had so much fun there.  I told her I would buy her an outfit for her doll there- then my brother did too and his in laws sent money with him to get something for Brynn as well.  Of course Brynn felt guilty and didn't want to be spoiled (true Brynn) but I told her I think you deserve it!  We enjoyed just hanging out at my brother's house with his outdoor pool and his golden retriever.  I told him those two things are all Brynn needs to be happy!  The end of the week we went to a Yankee game.  We got to go early and go down on the field.  The players started warming up and Derek Jeter was right in front of us!  We were pretty excited when he came over to sign our stuff.  He said "Nice hat" to Brynn.  I asked if I could get a picture of them and he was happy to do it!
We did so many things in the day- Brynn's nights were not good there.  She would have alot of pain trying to lie down and her nerve pain in her arm was getting worse.  I called Calgary a few times and we had to up her morphine while we were there.  I wondered many times if we would make it the whole week and I can honestly say it is a miracle that we were able too!  I know our prayers were answered and that Brynn was blessed to have that trip before things got worse.
When we flew into Calgary coming home we were staying over night because she had an appointment the next morning.  She was very excited they had a hot tub at the hotel because it felt good on her sore back.  We went early in the morning to go to the hot tub and Brynn took one step on the carpeted stairs and her feet went out from under her.  I've never heard her scream in pain that hard in my life and it scared me so bad!  I didn't know if she would even be able to get up but in a few minutes she wanted to still go sit in the water and she said she was fine.  We went to the appointment and they were a little concerned that something might be in her neck so we were already getting an MRI the next day and they said let's just see what it shows.  Kevin came up with all the kids to see us and to be there for the MRI which was such a good thing. 
The next day was a hard one.  We had her MRI and it took alot of pain medication to make Brynn comfortable enough to be able to lie flat on her back for the scan.  It was hard watching her and knowing that they were probably going to find something we wouldn't like.  It took her a long time in recovery to be able to wake up.  We were waiting there with her when her nurse called my cell and said Dr. Lewis wanted Kevin and I to come meet with him.  We left Brynn with Sadie and she was in tears because she wanted to come too.  She hates it when we talk to the Dr without her but we told her this time it was necessary.  The news from the scan were not what we expected at all- in fact the doctors were all surprised and said it was worse than they thought.  There was a growth that was compressing her spinal cord and it could snap at any time which would leave her paralyzed.  They said we needed to do emergency radiation that day.  Usually it takes a while to do all the prep work for radiation but not today.  We explained things to Brynn and then took her right over to Foothills where she had to do more scans to get her set up for radiation.  They started the first treatment about an hour later.  Usually they only do radiation Mon- Fri but they said we would be going right through the weekend.  The poor girl was already having symptoms from her last radiation treatment from 2 weeks before and now we were doing the back of the neck which would effect her throat as well. 
The last 3 weeks have been the hardest both physically and emotionally for our sweet girl.  I've never seen her so scared in her life and she's never had so much pain swallowing- even from her high dose chemo.  She has not been able to eat or drink and has had to be on TPN which is all her nutrition and fat through IV.  The doctors wanted to get her to our cabin because that's all Brynn said she wanted so they sent us home for the weekend and she woke up the next morning with a fever and we went by ambulance back to Calgary.  Last weekend we thought things were improving and they sent us home.  She lasted 2 nights and then was nauseated and was throwing up.  There was blood in her vomit probably from her irritated throat and the throwing up just made it alot worse.  She had meds she needed to take orally and she was in tears and just couldn't do it- the pain was too bad- so back we went to Calgary Sunday afternoon.
Because Brynn has always been so positive and kept us all hoping and believing it is crushing to see when she is getting down.  I have never felt so helpless in my life and I would do anything to take all her pains on myself and let her be free of it all.  She says how lucky everyone is that they get to go to school and be normal and she would do anything to be like them.  How that makes my heart break and it's hard not to say- Why Her?  She doesn't deserve any of this but then there are alot of kids going through this and none of them deserve it. 
Brynn is honestly my HERO!  I'm not sure what any of us would do if we were in her situation but she is absolutely not willing to give up- even though she is so sick of living like this.  We made it very clear to her that the cancer is becoming resistant again and we don't know if it will respond to anything.  She is adamant that she wants to try new chemo and do anything she can- even if it makes her more sick or she has to be in the hospital.  Back in October she said she would rather die from chemo than from cancer- that's a pretty profound thing to say at age 13!  We continue to HOPE for a response to the new chemo she started last week.  We are praying for her pain to be controlled and for her to be able to be home with family and friends.  We have amazing doctors and nurses that are taking care of her and they have the same goals we do and will do anything to make it happen.  As long as Brynn wants to keep fighting we will be right there with her.  We know miracles happen everyday- we experienced our own being able to do that trip.  What's to say we won't get another one?  We can never give up HOPE<3