Sunday, September 29, 2013

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

Sunday, September 22, 2013

September 22, 2013

We got to come home yesterday from the hospital after an emotionally exhausting week in Calgary.  We went up to start chemo again on Tuesday and they discovered that her ALT and AST numbers were through the roof which shows your liver functions.  They decided to do an ultrasound the next day and I went up to be there with them when we got the results.  They were not good.  There is a blockage coming from her liver and there is also inflammation of her pancreas.  They put her on higher amounts of steroids and said we would watch her numbers but right now chemo is not an option.  She is having abdominal pain because of the obstruction and it is making her jaundice.  Her skin and her whites of her eyes are turning yellow and Brynn doesn't like how her cheeks get puffy being on the steroids.  Calling her in and talking to her with the doctors was one of the hardest things we have done yet.  She is so perceptive and she knew the news was not good.  When they called us all into the room I just held her tight on my lap and prayed for the peace and comfort we would need.  First Brynn was hysterical and saying- " Your just going to let me die???"  But in true Brynn nature about an hour later she was calm and asking questions that a 13 year old girl should never have to ask.  She blows me away!  It was just like when I got the call when she was diagnosed and she was crying and asking about chemo and then she stopped and asked " Can I get a blonde wig?" and then went out to play on the trampoline while I watched out the window in tears.  She teaches me so much by her example and she always has such a sweet spirit with her. I know that she is being blessed and comforted to be able to handle all that she can.  We are doing are best to help her through everything and to keep hope that her numbers will come down to where they need to be to start chemo again. She is a figher and said tonight that all she wants for her birthday in two weeks is to be getthing chemo.  As much as we try to do what we can for her- she is comforting and blessing us much more.  We are heading back tomorrow (Monday) to Calgary and taking the whole family with us to enjoy spending time together.  We will continue to have hope- even though the things we hope for are changing as our journey changes.  I read a story of some people building wells in Africa and they had to carry trucks of supplies over the bridges.  The bridge was only supposed to hold a certain weight and their load was twice the limit.  They would bring extra lumber and reinforce the bridge and strengthen it so they could drive over it- then take their lumber with them and do the same thing with the next bridge.   At the end of the story it said "In any heartbreak there is just so much hurt, so much pain, so much loneliness.  Those are part of human experience and God does not always deaden them or take them away.  But though He does not always lighten the load, He does reinforce the bridge."
That is exactly how I'm feeling - My heart is aching and this is the hardest thing I can imagine..... but He is reinforcing our bridge.

Wednesday, September 4, 2013

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