February 21, 2013

I have been meaning to write about our trip ever since we got back and life has been so crazy busy- a good normal busy that I took for granted before and didn't know if it would be like that again!  We have been running to Sadie's basketball games and all the school activities and are so grateful for 4 children that are doing so many good things. 

Our trip to Phoenix was absolutely amazing!  My brother Mark and his wife Alanna made so many plans and did so many fun things with us there that Brynn said she felt like it was another "wish trip".  We are so grateful that things fell into place and we were able to go.  Once again there were many little miracles- Brynn had low counts and was very worried about leaving the country.  The doctors said we could check on Monday morning before we flew but the counts would probably be even lower because we had chemo again.  We checked anyways and were thrilled when we heard they were on the way up and she wasn't neutrapenic anymore!  We flew out that night and worried alot less!  While we were there we went to a Phoenix Suns game and got the VIP treatment- went early and got to be down on the floor- sit on the team bench and even met Charles Barkley backstage!  We had a private box with lots of food and it was a really fun night for all of us!  We swam, went shopping, went to a Phoenix Coyote game in another box seat and Kade even got to ride the Zamboni at the period break!  (Brynn was asked to but was too shy!")  We are so grateful for that amazing trip and that Brynn was feeling up to going on it.  It's been amazing how her chemo treatments have worked out perfectly for our schedules to fit everything in!  Her week off in December was the week of Christmas, then her week off in January was Sadie's semester break and we could go to Phoenix, and now she has this week off for family day and teacher convention week so we were able to go down to our cabin in Kalispell.  Everyone was going skiing and Brynn didn't think she wanted to ski so I was staying with her.  Well, she changed her mind so I bought her a ticket and explained to the lady that she would try but might be tired after one run.  Well, she shocked us again as she skiied all afternoon and kept wanting to go again and again.  I was skiing behind her at one point- it was beautiful outside and she had her arms out like she was flying.  Tears came to my eyes and I said a little prayer of thanks- truly amazed that I was even seeing what I was seeing!  Blessings are pouring in! 

We were extremely nervous to get her scan results back and were scared when our oncologist called the next day.  We cried together on the phone as he told us that they were amazed how things were shrinking and how much smaller the tumors were.  He said that the radiologist reading her scans thought they had done surgery and that was why he couldn't see her one tumor anymore.  We don't know which treatment is working or if it's a combination of the two but we are just going to continue doing what we are doing because it is working and she is feeling good.  She is such a trooper taking her pills and letting us give her the shots 3 times a week- but she knows things are responding which makes it easier to continue the fight. 

Kevin took Brynn to Nashville again right from Phoenix because flight were so much cheaper than coming back to Canada and flying from here.  Her doctor there received her scan results as well and was so thrilled to see how well she is doing and that things are shrinking.  We are going to see him in three months again and in the meantime just keep doing the treatments here.  The doctors are so excited at how she is doing that they are letting her do some of her treatments in Lethbridge and just come to Calgary once a month.  She has literally had no pain the last 3 months so we are now weaning her off her morphine and seeing how she feels.  So far she is doing great with that too. 

I know I say this over and over but blessings continue to pour down on this sweet little girl and our whole family and I know that alot of prayers are being said and answered on our behalf.  We can never thank everyone enough and we continue to consider each day a blessing and not take the little things for granted!

January 13, 2013

Happy New Year Everyone!!!!  As we end 2012 I have so many mixed emotions.  Wanting the bad parts of this last year to be over- yet some of our most cherished memories have been in 2012.  We continue to talk about our amazing wish trip we had last May on the Disney Cruise and Brynn just said last week that if she could choose a wish again she would go on another Disney Cruise.  It's good to know that she has never regret her decision!  Also getting sealed in the temple was the biggest highlight we had and will always cherish that memory.  As I took down Christmas and our 7 trees (yes 7!!!! I know I'm crazy but it made Brynn happy) I had so many different emotions.  I'm always ready to start fresh with a new year and make new resolutions- but this year is a little different.  I'm very aware of the up hill battle we have this coming year and although I am full of hope and positive thinking- it's not what I was envisioning.  At the same time the highs are higher and the things that usually go unnoticed become much more important and leave an imprint in your memory and heart.

Last week Brynn had surgery to get a central line (IVAD or port) put back in her chest and get her PICC line taken out that has been giving us trouble. We stayed up at Ronald McDonald House since she had to be at the hospital at 6:30am.  Our surgeon who we have come to love was not scheduled for that day but he came anyway to do Brynn's surgery since he has done every procedure she has had and really cares about her.  We so appreciated that.  The plan was to see how she was after recovery and how her counts were and then to have chemo that day (Wednesday) instead of Thursday instead of staying up there one more night.  She took a long time to wake up in recovery- mostly because she never wakes up before 11 let alone 6am!  When she finally had some food in her stomach she said- "Okay- tell the nurse I'm ready to go have chemo now!"  I just laughed at how she handles things and just accepts what she has to do all the time.  We went down to the oncology unit and were surprised at how high her counts were.  We were able to have chemo like we hoped and left that afternoon- even got home in time for Kevin to get to Sadie's basketball game!    We truly feel like little blessings happen everyday and we just have to recognize them and not just focus on the things we wish we could change. 

Next week is going to be tough as we have our first set of scans since we started treatment in October.  On Wednesday we have a PET scan, 2 MRI's and a CT scan.  We will be praying hard that the results show some response to the treatments she is receiving.  We don't care which treatment is working as long as one of them is!  We are so excited that we are going to Phoenix the next Monday on the 21st.  Brynn has wanted to go visit my brother and his family since she first got diagnosed two and a half years ago.  He has a beautiful home and yard with a pool, tennis court, and two dogs. That is one of the reasons we got the port in so she could do one of her absolutely favorite things which is swimming.  They made sure to get it in on time to heal before going to Arizona.  Brynn has a week off of treatment the same as Sadie's semester break so we decided to go for it and take the family there for a week.  It will be nice to get away and if anything happens our oncologist says he has friends at the Phoenix Children's Hospital.  He seems to have friends everywhere but hopefully we don't have to meet them on this trip!

Today in church we talked alot about trials and the things we have to go through in this life.  We read a scripture that basically said that everything we go through is for our good and to give us the experiences we need to help us become more Christ- like.  I know that some things we will not know the meaning of on this earth but we have to trust that our Heavenly Father has a plan and that he knows what is best for us.  I feel like if our lives were always smooth and free of problems we wouldn't ever develop the empathy we need to help others through similar problems.  I wish we could pick and choose the trials we have- and maybe we did- but it's still hard to accept sometimes.  As we head into this week of scans we would ask for continued prayers for our sweet little courageous daughter- that we can have the results we are hoping and praying for and that we can have continued peace and comfort as we continue on this unknown journey.

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!

November 11, 2012

Well, our decision was made for us.  We were faced with the decision whether to put Brynn on a clinical trial for chemo or traditional treatment.  We were definetly leaning towards the trial because it used the same drugs as the traditional but added a new one in addition that was not proven yet.  We were not able to start the trial until Monday or Tuesday which concerned Brynn because she just wanted to get going, worried that things were growing and spreading.  The one concern the oncologists had was this infection she is fighting from the biopsy that they didn't want to get worse with the trial.  We then learned on Friday that she no longer qualified for the trial because of the infection she is recovering from.  It was almost a relief that the decision was no longer ours- and the concerns we had with the trial drug were no longer an issue.  Brynn was glad we could start chemo yesterday instead of waiting a few more days.  One of the biggest concerns Brynn had was the size of the chemo pills that she was going to be taking daily.  She has really struggled with swallowing pills and she gets very anxious wondering how big they are and if she is going to be able to get them down.  They talk about "tender mercies" and I believe we had one yesterday when they brought the pill in and we were so surprised how small it was.  I teared up with relief knowing that she could do it and it wasn't going to be a huge obstacle for her every single day!
She got her IV chemo and took the pill no problem yesterday and then Brynn asked for a pass to get out for a couple hours before her next IV antibiotic.  She was feeling great so they gave the okay- she was so excited to just go to the mall a couple block away and get out of the hospital for a bit.  When we got there- we were barely there 20 min and she said her head was starting to hurt.  I gave her a morphine pill but it did nothing and she was getting worse by the minute.  I've never walked so fast pushing the wheelchair as we hurried back to our truck to get her back to the hospital.  I called them to let them know she wasn't doing well and we would be back in a minute.  She started throwing up in the car and it continued for the next hour.  Her head has never hurt so bad and it killed Kevin and I seeing her in so much pain. Her blood pressure was extremely high which they thought was from pain and if they could get enough morphine in her then it would go away.  Brynn started asking for the blood pressure medication that she had a few days before- as soon as that was given it was almost instant relief.  We were so happy to see her comfortable again.  Kevin just held her head in his hands until she knew the pain was gone. 
The night was not too bad- still pain in her back that required morphine every few hours but no headache.  We said alot of prayers last night and they are trying to figure out why her blood pressure has been going up every other day.  We pray for the doctors to be guided in knowing what to do for her so she gets the best care possible.  Brynn continues to amaze us with her positive attitude and quick wit.  She is always making us laugh and smile and is such an inspiration.  Hopefully we will be able to come home in the next few days and then will be making weekly trips to Calgary for IV chemo.  We miss the rest of our family so much and can't wait to be home all together again soon!

November 9th, 2012

I'm having  a hard time wanting to write on this blog because it still seems surreal that this turn of events is actually real and not a nightmare.  We were able to go home on Halloween day and be with our family.  We really needed to regroup and see our other kids as well.  Brynn wasn't feeling great but did manage to put her costume on and get driven to a couple of houses.  We were in close contact with the pain team in Calgary and it took a couple days to fine tune Brynn's morphine and make sure we were giving the right amount for pain and not too much and making her sleepy.  The day after we got home I was concerned that her biopsy sight was a little red around the bandage.  We took pictures and showed our doctor and we got her on oral antibiotics right away.  By Friday- 2 days later however it looked worse and was an angry red color, very warm to touch and she was sleeping all the time.  We took her into emergency and got her on IV antibiotics.  We were scheduled to come back to Calgary on Tuesday to get treatment started but unfortunately her infection wasn't cleared up enough yet.  They switched her to a stronger antibiotic and she had an allergic reaction to it.  The last few days have been rough- she has had a few allergic reactions, 2 blown IV's, a few failed attempts at new IV's and high blood pressure requiring medication.  She is getting tired of the endless doctors needing to look at her infection site and a few ultrasounds, echo, ECG and other tests.  Right now she is in surgery getting her PIC line put in. The room feels so empty when she isn't in it! She is still in unbelievable good spirits most of the time even though she has been fasting since midnight last night thinking her surgery would be before noon and it ended up not being until 5:30 pm.
One of the hardest things about Brynn relapsing is that she is such a worrier and so smart.  She asks so many questions that I have no good answer for and it breaks my heart as a mother not to be able to take all her fears away.  She told the doctors she want to get chemo going right away because she is worried it is growing and spreading inside of her.  We are supposed to begin either tonight or tomorrow.  They will keep us here through the weekend to keep fighting this infection and then hopefully we will be home Tuesday or Wednesday for a little while.  Our kids at home are having a hard time- especially Sadie.  She is so strong and doesn't want to make any of this about her but I know she is keeping it all inside and it's hard to hide it all the time.  Her and Brynn have been so close and decided to share a room again when Brynn was done treatments last year.  She is such great big sister and I'm so glad for the special bond they share. 
Brynn just returned from surgery and is having some back pain.  Time to go be with my baby.... I'll put up more pics when I'm back and on my home computer.

October 29,2012

Today was THE hardest day of my life.  I was hoping to never post on this blog again- it would be to remember Brynn's treatments and look back at it when we were back to normal life.  Brynn has been done treatment for a year now and has not has as much as a cold.  She has dove back into everything she missed while in treatment- 4H, basketball, volleyball, swim club, baton lessons, piano lessons and much more.  We recently lost 2 close friends from the hospital and I was having a really hard time not feeling guilty that Brynn was doing so well.   That all changed so quickly that I wasn't at all prepared. 
Last Friday we were at a very close friends funeral when Brynn complained that her back was sore.  She is playing volleyball right now so that was my first thought.  Also when Brynn was diagnosed my back was terribly sore and was told that when you are stressed or mourning you carry it all in the back- that made sense with what she was going through.  When it was still sore 2 days later I decided we better check it out and see if she had a kidney infection or something.  It quickly changed to her throwing up ( she had friends with the flu as well) and then the pain left her back and moved to the right side of her lower stomach.  I took her in to the hospital a couple more times trying to figure out what was wrong.  Calgary decided to do a PET scan and we waited for the results of that.  Everyone from Taber and Calgary hospital felt sure that it was either the start of her period or kidney stones that were causing the pain.  We came up to Calgary yesterday and this morning I went in rounds to hear what the dr's were deciding to do.  I was completly blind-sided when they said there were multiple hot spots that showed up in the scan and that it was very worrisome that she was relapsing.  I can honestly say that today has been worse than the day she was first diagnosed.  I feel angry and frustrated that things were going so well and that we had no signs or symptoms earlier and that things could change so quickly for us.  I have felt nauseated all day with the news- yet needing to be strong and answer all of Brynn's tough questions the best I can.  All I know is that she is one amazing kid that has touched so many lives and continues to be an example of strength and courage to me. 
Tomorrow we have surgery and figure things out so we can come up with a game plan with the team of oncologists.  We have amazing support from family and friends and feel the prayers being offered on Brynn's behalf.  Please continue to pray for her- I am going to try to update regularly on this blog that I guess isn't done it's story yet....

May 2012 Disney Cruise- Here We Come!!!!

I have had good intentions to write on the blog for a while now- but things have been so crazy since opening our store in March that I literally have not had time to sit and do any personal things on the computer!  We have kids involved in so many activities that we are either running them or running to the store.  It has been a different busy than I am used to- but like our nurse said- it has definitely helped keep my mind occupied with something other than the next scans! 
Brynn has been doing amazing!  She has got right back into a normal 12 year old life!  She is doing great in school- missing a year and a half of being in the classroom has not seemed to hurt her a bit!  She worried about her grades all the time but usually surprised us with all her great marks!  She decided to go into baton lessons with her friends and has been enjoying twirling at home all the time!  We usually have to tell her to put it away as she is spinning it by our heads constantly and she likes our high ceilings in the living room where she can throw it in the air!  She decided to join the club basketball team just this spring and to go in a tournament that was in Lethbridge last weekend.  The last time Brynn played basketball in grade 5 she was so timid and shy on the court she looked like the last thing she wanted was to have the ball passed to her.  This time she shocked us all with her speed and aggression.  I guess everything she has been through has put some spunk in her!  She stole the ball away quite a few times and even though she was pretty tired at the end- she had a big smile and was so glad to be on the team with her friends. 
This past Tuesday she began swim club again!  She was on the swim team when she was diagnosed and they have been so supportive throughout treatment.  They told us they would save a spot for her whenever she could come back.  She was so excited because swimming is probably her favorite sport and she only went a couple times over the past 18 months.  Her coach said how awesome it was to have her back and how smooth her stroke is still.  She is excited to go in some swim meets over the next few months!
We are so excited that in 4 sleeps we are leaving on our trip with the Children's Wish Foundation!  Brynn finally decided on a Disney Cruise!  She had a few trips that she was deciding between but when we received the DVD on the Disney Cruise she was so excited and knew that was what she wanted to do!  It is going to be so nice to get away as a family and we are really looking forward to making some amazing memories!  They are so extremely generous- they sent us a big box full of things and even a new camera for us for the trip!  It will be amazing!!!

The end of the month after our trip is time for scans again.  We are trying not to think about it constantly and just keep praying and having faith.  We hear of trials others are having and we know we are not the only ones going through things.  We feel very fortunate and never forget to count the blessings we have received.  We continue to pray for our friends that are struggling or are needing comfort- we love you guys!  So we will go and relax and enjoy this trip of a lifetime- and then go to our scans with optimism and holding our breath.