Monday, February 28, 2011

December 2010

It was so nice to see improvements to her foot each day and continue with radiation to get it over with. We had one bad day when it was -37 and our vehicle parked outside Ronald McDonald House wouldn't start because it had no block heater. I got it boosted by some trusty Hutterites and then left it running by the door while I carried Brynn into radiation. I thought I better leave it running and when I came out I had a $140 ticket on my windshield!!! What a day!!!! I wrote a complaint explaining and got out of it thankfully. It felt like we were living in Calgary now. RMH is so awesome and we had some awesome things happen for Christmas. Some activity day girls from our church in Calgary came and sang carols and brought gift for Brynn. She had never met any of them and they acted like best friends by the end of the night. They had a hayride pulled by horses that a we rode on that night. The most amazing wad the Telus Santa flights we got to go on. We went to a private airport and they had food, treats, gingerbread houses to make, crafts and Mr. And Mrs Claus came. We got to go on a private plane and fly around Calgary. They called each of our kids up and gave them a huge present. I couldn't believe all they did, it had me in tears. The plane ride was a little hairy. Our first attempt to take off it got very windy and we were fish tailing a bit down the runway. They decided to wait for the wind to die down. Reese was obsessed with Mrs Claus. She sat on her lap and talked her ear off. Then the kids got their faces painted and were given stockings full of treats to take home- and we got to ride in a limo!!! It was amazing! Then I raced home that night because my mom went in with stomach pains and was having emergency bowel surgery. I stayed home that next week to be with mom while Kevin stayed with Brynn. She ended up being delayed for chemotherapy because of counts. We were so worried she was going to be admitted for Christmas. We prepared ourselves and our kids started hoping to be at RMH because they heard how spoiled everyone is there for Christmas!!! Thankfully Brynn finished chemotherapy and her and my mom came home on the 23rd. We had a wonderful Christmas eve and Christmas day together. It was quiet and we just enjoyed being home with family after a long 2 months in Calgary. Then boxing day Brynn got a fever. We took her to Taber where she started antibiotics and discovered she had an ear infection. After two night there they decided to send her to Calgary because there was so much flu going around the hospital and she had low counts. Kevin took her and after 2 night in Calgary was able to come home on the 30th. She was excited to be home for New Years. Then on New Years Eve my mom was feeling worse. We took her in and discovered she had infection from surgery!!! What a time- I'm sure one day we will look back on this year and laugh right???

Thursday, February 24, 2011

November 2010

We were so excited Brynn got to be home for Halloween!  She wanted to be sooo bad and her wish came true once again!  She felt pretty good still because she came home Friday the 29th and we had Halloween in Barnwell on Saturday the 30th.  She dressed up like Hannah Montana and her friend dressed like Lola her sidekick.  Brynn had a long blonde wig and everything.  It was so nice outside and we had a great time trick or treating as a family.  I promised Brynn we would put the tree up the first of November this year.  We had to go back to Calgary on Monday the first to start radiation so we put it up on Sunday (which was actually Halloween) but we weren't celebrating that day.  Lots of people thought we were nuts but I didn't care as long as Brynn was happy.  There were actually about three other homes that put there tree up that soon too!  Well the next day was the first day of radiation and we were so nervous.  We didn't know exactly what to expect and didn't know which side effects she was going to have and how bad she would get them.  She was receiving 28 doses on the bottom of her foot and 21 on her groin.  They were starting with the foot and then after 7 days they would start doing both sites each day.  When they took us into the big room and had her lay on the table I couldn't believe the huge machine and was so nervous for her.  She had to lay face down in a mold they had made earlier for her so she would be in the exact same position each time.  She would lay down and they put a bolice on her foot which was a gel like material that tricked the machine into thinking it was skin so it would intensify the beam to the surface of her foot.  When they had her all set up they said we had to leave the room now and we would watch her on the screen and we could talk to her and hear her.  This big thick door closed behind us and I felt so bad that she was in there all alone.  When they turned on the machine it only lasted about 12 seconds and then it was all over.  I was crying and had to hurry and compose myself to go in and look happy like everything was totally fine.  She was so brave and I was so proud of her!  It was hard the following week when she started her groin too.  She did so well with her foot laying face down but doing her groin she was face up and with her head at the other end right under the machine.  It moves around and was more scary for her and she was tearing up and looked terrified the first time.  She wanted to cover her face with the blanket so she couldn't see.  I was in tears again because she was crying and we didn't know what damage the beams were doing to her poor little body.  After the first time she never cried again.  We discovered the radio we could turn up and found a station in Calgary that only played Christmas music.  After that we would crank the tunes up and I would have to tell her to hold still and no dancing until radiation was over.  It only took about 5 min to do the groin too.  Things were going really well until her foot started to get more and more red and sore like a sunburn.  Then it started to get sore to walk and I would find fuzzy shoes and things that felt good to walk in.  It kept getting worse until it throbbed to even have her leg down because the blood rushing down would hurt more.  We started having to carry her and keep her foot up all the time.   I would park by the door and carry her in, go park and pay at the parkade and run back in.  Finish radiation and leave her in the waiting room while I brought the car to the door and then carry her back out again.  This was our routine everyday for most of November and December.  We were in Calgary for 26 days of November and 21 of December!  I reluctantly went with my sister and our daughters to Great Falls for Black Friday shopping the end of November and left Kevin with Brynn.  I felt bad but he reassured me I needed a break.  I only stayed one night and was driving home when she called me bawling that she had a bump on her foot again and she thought her tumor was growing back.  I was terrified!  By the time I got there the next day she had grown a massive blister on the bottom of her foot.  The doctors were calling everyone to see it and everyone had conflicting ideas of what to do with it.  Some wanted to pop it and some said leave it.  She was neutrapenic so we were worried about infection.  We stopped radiation for a few days and were constantly doing sterile dressing changes on it.  I have pictures but will see if Brynn will let me put them on.  Then more blessing came!  The blister drained on it's own, no infection happened, it stopped hurting, we resumed radiation and everyone was amazed how it healed.  The blister and dead skin was like a natural bolice so they stopped using the other one, and everyday we would redress it after radiation.  It would look better and better everyday.  We couldn't wait to be done!!!!!  Brynn was such a trooper- she couldn't even walk to the bathroom on the blister so I would pick her up and carry her while she pulled her IV pole.  We were quite the site!

Sunday, February 20, 2011

October 2010

Well at the end of September, Brynn ended up getting a fever again.  She was so worried she would be sick for her birthday!  She said all she wanted for her birthday was to go to school!  I thought that was probably not going to happen!  On October 4th the day before her birthday, her best friend Kaylee got to spend the whole day with her.  We went down to the river and had a great day.  We got her blood work done and waited to hear the results.  That afternoon our nurse Jo called and said "Guess what?  Her counts are so good she can go to school tomorrow and lick a doorknob if she wants to!"  We had a good laugh about it.  That night Kaylee's mom sewed a dress for Brynn to wear to school for her birthday!  My sister who is the secretary at the school planned a fundraiser called "Trim for Brynn" for her birthday and we didn't know if she would get to it- but now she could!  The last period of school the whole school was busy decorating the whole gym for it.  They had 10 hairdressers set up in their stations to cut hair, 2 men shaving heads, and 3 of Brynn's dad's friends raised money by getting their legs waxed!  When we arrived Brynn was wearing a hat because she had recently shaved her own head.  As soon as we got their her big sister Sadie ran up to us and said "I'm shaving my head!" I didn't believe her and actually questioned her doing it because I didn't want to hear that she regretted it later!  She ran over and was the first girl to sit in the chair.  They took the first buzz right through the middle of her shoulder length hair!  Both her and I had tears streaming down our faces!  I couldn't believe my 13 yr old daughter that was so into her looks and hair was willing to do that for her sister!  The whole night was unbelievable.  They had supper people could buy, they had tables and tables of things being auctioned off by an auctioneer, they had 500 cupcakes made for her birthday, and it was packed!  Many people said they had never felt such community spirit before.  At the end of the night 55 people had shaved their head for Brynn and the school only has 150 kids in it!  My sister had a goal of raising $5000 and a teacher Mrs. Forbes said if they raised $10,000 she would shave her head!  They ended up raising $22,000!!!!!!  We were completely overwhelmed as we thanked everyone there.  The next day Sadie"s crosscountry team competed and half their team was bald!  It was so awesome to see Brynn take her hat off and be completely comfortable because everyone else was bald!

Later in the month Brynn got another fever and had the worse mouth sores she had ever had.  I felt so helpless as she couldn't even swallow a milkshake without being in tears.  Thankfully it only lasted about 5 days and then she felt better.  The next big step was taking her stem cells.  It is crazy what they can do at Children's Hospital.  They give her these GCSF shots and get her counts as high as they can.  They scheduled her stem cell harvest for Thursday and when they checked Wednesday her counts were really high.  They said its too bad we aren't doing them today!  But the next day they were even better!  A team came from Foothills and hooked her up to this huge machine.  It takes her blood out of a port they put in her leg and spins it and separates it and stores this special baby stem cell.  Dr. Lewis asked for 900 million which he said was a crazy number but they would see what they could do.  They said it takes about 8 hours and she has to lie very still.  Some kids are on it for allot longer and they don't get the number the Dr hopes for.  Well, after 3 hours they checked what they had and they had more than the Dr asked for already!  They were cheering and high five-ing each other!!!! So Brynn has 4 bags of her stem cells that she can get back when she needs them which is awesome!

Sunday, February 13, 2011

September 2010

Brynn flew through the first 4 weeks of chemo no problem.  Her hair was starting to thin quite a bit but her hair was so thick to begin with she still had more than me! My sister brought her bunkbeds over and moved Brynn upstairs with her sister Reese so she would be closer to our room and we could hear her.  Her first week off was the first 2 days of school and she was so excited to see all her friends she hardly saw all summer.  Her best friend Kaylee did come and visit her alot and that was soo nice for Brynn.  She was so excited to get a desk and feel like she was part of the class and wear her new school clothes and all that good stuff!  She loves buying all the school supplies and even though we didn't know if she would even use it this year we went ahead with whatever made her happy!  I thought she might only last half the day at school but she enjoyed the first 2 full days and even wanted to play with friends after school.  It was so good to see her being a normal kid after the summer she had.  She had her first evaluation where they do alot of tests: MRI, Bone scan, CT, ECHO, ECG and  see where she is at.  We had great news, the tumor was already shrunk to half the size! She started a new harder chemo that would take her counts down to 0.  She came home and was doing well for the first week.  Then I went to Sadie's first volleyball game in Milk River and came home and gave her a hug and she felt hot.  It was the first time I had really been away from her and I couldn't believe she had her first fever.  I took her temperature about 6 times to make sure and they were all over 38.  If it reaches 38.3 once it is a emergency and we were to go right to the hospital.  I remember how scared I was as we drove to Taber hospital.  They called up to Calgary and got her started on antibiotics.  We would soon learn that this would be a normal and regular occurance.  The end of September we had our first meeting at Foothills to meet with the radiation doctor.  Our first meeting had us all in tears as he talked about all the possible side effects and that they had discussed amputation.  Brynn turned to us and asked what that was.  It was so hard to tell her that they were actually considering that and she was devastated!  We finally went home when her counts were up and only had a few days before chemo started again.   It was so hard to not see my kids and then have them bawling when I had to leave again.  It is a HUGE adjustment for the whole family!

August 2010

Well to continue backtracking August she did pretty well with the chemo.  She started on two chemo drugs that aren't extremely harsh and she was a little nauseated but we soon figured out which antinausea drugs worked for her.  Kevin's sister Kristen and her husband Tom did a fundraiser with Safeway and had people donate hats for Brynn.  It was a barbeque and bake sale and it turned out way bigger than they imagined.  We had an overwhelming amount of support and donations and made over $8000 and she had 37 hats donated that day.  She tried them all and then donated the ones that didn't fit or were duplicates.  My brother and sister wanted to order bracelets for us to all wear to support Brynn.  They ordered about 200 purple rubber bracelets that said Team Brynn on them and we were out of them in no time- everyone wanted a bracelet to wear!  After that they ordered another 400 bracelets.  We were giving them to nurses also as they were becoming some of our greatest friends! It was so hard to accept so much help but at the same time so nice because we never felt like we were going through it alone.  The YW and other families were filling our freezer with cookies, casseroles and soup.  We stayed as a family at Ronald McDonald house for alot of August because Brynn didn't need to be admitted for her chemo and we knew we should spend time together before school started.  I wrote in my journal that I just had to keep the faith and take one day at a time.

Thursday, February 3, 2011

July 2010 Staging

Next step after she was diagnosed was staging.  That is when they see where all the cancer has gone and you are staged 1-4 (4 being the worst) to see what treatment they give you.  They explained she would be having a few surgeries to determine this.  She also got to choose which line they would put in either an IVAD or broviac to recieve all her meds through.  The broviacs are external and hang outside your body all the time but you never have to get any pokes.  The IVAD is under the skin so is hidden more when not accessed but you get poked each time they access it.  Because Brynn loved swimming and only the IVAD you can go in water during treatment she chose this one.  They scheduled surgery to put that in and also to do a spinal tap and take a piece of her lung out that looked suspicious in the scans.  We were so relieved when it came back negative and her lungs were clear.  She had a chest tube put in from her lung surgery which was extremely painful.  Brynn's tube came out more on her back than her side so laying on her back was impossible.  We would try to prop her up on her side but any movement felt like a knife in her ribs from that tube.  Thankfully it only had to stay in a few days.  Next they took lymph nodes from her groin on the same side as her tumor and they said they looked like they could be infected.  When those came back positive they needed to go one step higher and check the lymph nodes in the pelvis/abdomen area.  I prayed like never before and was sure that with how small her tumor was and no symptoms it would not have spread and she would only be stage 1 or 2.  We were shocked when the little normal looking lymph nodes there were positive and therefore she was stage 4.  I felt like I had been kicked in the stomach and for some reason my prayers weren't being heard.  I was very frustrated and shocked.  Than Kevin said that maybe Brynn needed the higher doses of chemo to get rid of it for good and it was a blessing that she wasn't staged wrong and not getting enough chemo for what she had.  At least we can never feel like she didn't get enough treatment.  Jane Porter was my friends mom who lived right next door and raised 7 kids.  She is an amazing woman and 2 of her sons had cancer only about a year apart.  She told me that she kept a blessing book and wrote down every blessing that she could think of during her treatment and she couldn't believe all that they were blessed with.  I started doing that while Brynn was in surgery and it was amazing how much better I felt.  After staging and knowing she was getting the most intense chemo treatment-51 weeks long they let us go home for a bit to regroup before the first day of chemo. I wrote in my journal that Brynn cried when they told her the lymph nodes were infected than started consoling me and telling me that everything was going to be okay.  It's crazy how Brynn is helping US through her treatment.  She is the most courageous person I know and I can't imagine why she was chosen to go through this except our Heavenly Father knew she could handle it and it would help us and others grow stronger and have more faith.  Someday we will look back and see what came out of our trials.

Wednesday, February 2, 2011

July 2010- Diagnosis

Well I am going to sort of brief everyone from the beginning.  In June Brynn was a perfectly happy healthy 10 yr old.  She was busy in swim club which is her favorite and was competing in the home swim meet.  One day after swimming she was sitting on the couch reading when she noticed a bump on the bottom of her foot right in the arch about the size of my thumb nail.  She called me to look at it.  I felt it and it didn't hurt at all so I thought it must just be from her shoes or something.  Brynn is a bit of a worry wart though (thank goodness) so a couple days later she asked if I had called the doctor yet and I hadn't.  I called that day and made an appointment but the soonest that was available was in two weeks.  My oldest daughter Sadie happened to have an appointment the next day so while I was there I mentioned to Dr. Torrie ( good friend from High School) that I would be coming to see him again in a couple of weeks because Brynn was worried about a bump on her foot.  He told me I should bring her in that day and that I didn't have to wait for my appointment in two weeks.  I really thought he was being over cautious but I reluctantly drove Sadie home and picked Brynn up and brought her right in.  He looked and immediatly called and booked a CT scan for the next morning and a MRI for 2 days later.  My biggest worry was that we might miss some swim meets while we had this syst removed! The day of the MRI was the awards day for the end of the school year and we made it back just in time for them to start the Grade 5 awards.  Brynn won the award for Citizenship and always being kind to everyone- I was so proud of her and told her that was way more important to me than any scholastic award.  The next week Dr. Torrie said the results were inconclusive so he was sending us up to Calgary to get a biopsy done.  When we met with the one doctor he sent us to another and we were told it was probably nothing to worry about since it was circular and didn't hurt to touch it, but they would just make sure.  We went home feeling fine about things.  I will never forget July 2, 2010.  Kevin was away working up north, my sister ( and best friend) was away on a holiday to the states, and my mom was in Lethbridge with Sadie and her cousins and my sister-in-law shopping.  I was home alone with our youngest daugheter Reese who is 3.  Brynn and her 6 year old brother Kade were riding their bikes to the library.  I recieved a phone call from the Children's Hospital and by the sound of his voice I could tell something was wrong.  He said they had some bad news and that Brynn had rhabdomyosarcoma.  I said what's that?  He replied that it was cancer and she would need to start chemotherapy right away.  I don't remember anything else about our conversation.  I felt numb and began to shake and couldn't even talk.  I called Kevin immediatly and told him through sobs and he packed and left for home immediatly.  A few minutes later my daughter who I thought was perfectly healthy came riding up on her bike and I had to sit down and tell her!  She cried of course and we held eachother.  I'll never forget how she asked if she would lose her hair and then a few minutes later stopped crying and said " Can a get a blond wig?"  After that she went out and jumped on the trampoline and I tried to not cry in front of her.  I didn't sleep for about a week and felt like I could hardly function.  I don't even know how Kevin and I got through those first few days!

Tuesday, February 1, 2011

February 1, 2010 First Day of Blog!

Yay!  I've been thinking I should start a blog for months now but haven't took the time to learn how.  Thanks to my good friend Allison Amsing here at Ronald McDonald House I finally got it going.  I'm really not that computer savvy so once I asked her for help, she took out of her busy life to sit down and walk me through it.  Brynn is sitting right now with her and looking at cute background designs while I type!
We have had a whirlwind of a year since Brynn was diagnosed last July.  Someone mentioned a blog to me back then but I was numb and in shock for a while and a blog was the last thing on my mind.  Looking back now I really wish I would have done this instead of writing in my journal because there are so many things I'm not going to remember and I didn't always take the time to write down.  My New Years resolution was to start a blog so I'm only a month behind!  I will try to recap some of what has gone on the last 7 months of Brynn's crazy life since we found out her diagnosis.  I'm hoping to write on here more for friends and family to hear news than me posting on our facebook page "Praying for Brynn"  Bear with me as we never know where we are going to be, hospital, Ronald McDonald House, or home.  I will try my best to backtrack and to keep you up on the most current info.  Thanks again to all of you!  Especially thanks to Allison as this probably never would have happened without her- we love Charolette and the whole Amsing Family!  Thanks again for everyones support- we couldn't get through this without you!