Saturday, December 29, 2012

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!

Sunday, November 11, 2012

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!

Friday, November 9, 2012

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.

Monday, October 29, 2012

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....

Sunday, May 6, 2012

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.

Sunday, March 4, 2012

March 4, 2012

I'm officially the worst blogger ever!  I can't believe how busy I feel and how little time I seem to have to sit down at the computer!  I would never use the Internet period if it wasn't for my iphone!  We are in the process of opening a franchise in Lethbridge and Brynn's nurses said it would be great for me to keep my mind on something else but getting it started is definitely busy.  We had such an amazing Christmas with Brynn being healthy and home!  We had the privilege of being asked to do the live nativity that is held outdoors each year!  It was a very special experience for our family and really set the tone for Christmas and remembering the birth of the Savior and focusing what the true meaning is.  Brynn was so excited that there would be real animals at it and said she didn't care what part she played as long as she could be with an animal!  They chose her to be the stable boy and she was thrilled to be the one to hold the donkey for Mary and Joseph and lead it away when they reached the stable.  A few times I was worried that her little 75 pound body couldn't handle the donkey but Brynn had treats she brought in her pocket and did a great job! 
In January we lost one of most dear friends that we met from the hospital and Ronald McDonald House.  We had known for a few months that it was a possibility but we just kept praying for a miracle for this special little family.  Brynn met Charlotte the first week we started treatment and there was an instant connection between them.  I can honestly say that the last few months since finishing treatment and returning to home and what is supposed to be "normal" life again- has been the most emotional time since she got diagnosed.  We have lost 5 friends from the oncology unit since September and that really takes a toll on you emotionally.  Not only on me but on poor Brynn who is such a smart, thoughtful girl who has lots of valid questions for a mom that has very few answers.  Our hearts felt literally broken for these families and we feel so helpless but continue to pray for comfort and healing and that they can know they will see these sweet children again.
In February we were once again invited to participate in the Radiothon for the Children's Hospital and it was such a treat for our family.  We hadn't been there for over 2 months and were excited to see some of our friends and nurses that have become our extended family.  I had given a poem that Sadie had written for school to one of the nurses before Christmas and it had been passed on to the Hospital Foundation.  They asked Sadie to read it on the radio (much to her dismay) but she did it and had us all in tears.  I'm so glad her teacher told me about it and gave me a copy since my daughter hadn't said anything about it.  They were asked to write a quick poem in 5 minutes about something that means something to them.  What an amazing girl- I have to say!  It goes like this....

And I'll never forget the bright colored walls
it all looked so joyful and fun
is this really a hospital? I thought to myself
but the story had only begun

And I'll never forget how my heart sank
as we strode down the oncology hall
the way you can here young patients crying
and my sister would experience this all?

And I'll never forget Brynn's hospital room,
her frail body sprawled on her bed
I always felt a little sad being there
when would her hard year end?

And I'll never forget how my point of view changed
this place was here to save lives
people there became like your family
and you help other children who cry

And I'll never forget my young sister's face
when her trial with cancer was through
this place is now our second home
Children's Hospital I owe it to you.

I have to say I was in shock when I first read it- that she wrote it in such a short time and that she would write about this subject at all at school.  We aren't sure where she got this talent from?

The end of February- actually on my birthday the 27th we had our scans again.  I couldn't believe how quickly 3 months went by!  I felt very anxious but fasted the day before and knew alot of prayers were being said on Brynn's behalf.  I felt so good when we had our appt in clinic at first and the doctor said they considered her cured!  I felt very optimistic since she looks so good and she seems to be feeling pretty much normal.  After that we went to her MRI and I assumed they were doing her foot and abdomen since that's what we did last time.  She reacted to the CT contrast so they decided they would only do MRI's from then on.  When they only scanned her foot it had me a little worried and then in her hour long bone scan afterward, they said they were done and then took more pictures of her foot at the request of the radiologist.  I reassured Brynn that it was no big deal but Kevin saw the look on my face- I hide my emotions so well!  On the way out of the hospital we ran into some friends we haven't seen for quite a while that were done treatment.  I gave the mom a hug and asked how they were doing when I saw the tears in her eyes and she answered-Not good!  I felt sick the whole way home and could hardly sleep that night!  I called the next day and they said they could arrange another MRI if I was going to be losing sleep over it until the next scans in May.  They are so good to understand the anxiety of a mother and are so willing to go above and beyond.  We did recieve the good news last week that her scans are all clear!  We believed they would be but it is still wonderful to hear the words!

I have to say how grateful I am to be home as a family again and to be able to see all my children together- even though I didn't remember how busy I was before until I came home from the hospital!  We continue to have so  much support and love for our family and Brynn was so thrilled to return to school in January and to be with her class again!  They had a surprise party for her and sang a song to welcome her back!  She has beautiful downy soft hair and her glow and contagious smile are as bright as ever- she never did lose that!  So good to see her feeling like a normal kid again and not taking a single thing for granted!  I'm trying to be like her and not slip into the trap of not appreciating every single blessing we have:)