October 2011

Once again time flies and I haven't gotten around to the blog for a while.  It's amazing how much busier I am at home with four kids rather than in Calgary with one!!!  We have all been home for a month now and it's so nice to feel like we can be together like a normal family again!  I don't know that we will ever be NORMAL- but you know what I mean!  After my last posting we had tragedy strike again.  As you all know- Brynn is a huge animal lover and her golden retriever Zoe that was given to her by our amazing friends- was her absolute best friend and kindred spirit!  We had posters all over her hospital door and every nurse and oncologist knew about Brynn's dog and that she couldn't wait to get home to be with her.  Well, on September 14th when Brynn was still recovering from her transplant in the hospital- Kevin called me very upset on the phone.  I had just got out of rounds with the doctors about 15 minutes before and they asked if there was anything they could do to help Brynn feel better.  I jokingly told them- let her dog come stay here with her!  So when Kevin said the words- something is wrong with Zoe- I just took her to the vet- I was in shock.  She had gotten into antifreeze somewhere at one of our neighbors and had lost mobility so Kevin took her in.  Everyone knows Kevin can be tight with money- but he was crying and told the vet- this is my sick daughters dog and I don't care what it costs- you have to save her!  They put her on IV and I didn't tell Brynn why I was upset because I didn't think she could handle worrying about her.  I had everyone as well as myself praying for Brynn's dog to make it and be okay.  I thought there is no way Heavenly Father won't heal this dog.  A couple of days later we heard that she was not responding and her organs were shutting down.  I broke down in the hall and didn't know how I was ever going to tell Brynn.  The doctors debated if it would be good or bad for Brynn to know right now.  I knew she always regret not seeing her.  They decided to give her a pass to go home for a few hours to say goodbye.  I was so scared and said a prayer before I told her.  Brynn was soooo sad but once again amazed me at how strong she is and how she was able to handle losing her dog when she felt horrible herself.  She had a feeding tube and they took her off IV's but we had to put fluids and meds through her feeding tube every hour for her to be away from the hospital.  That was a very hard night and I will never forget how Zoe perked up and layed there wagging her tail while Brynn cried on her.  She was an amazing dog and she knew Brynn was sick and she was there for her whenever she needed her.  I was almost more mad that this could happen with all Brynn was going through than sad.  My shortsightedness changed when the next day we learned that our dear friend Grant had passed away at the hospital.  His mom had become one of my closest friends in such a short time and my heart physically hurt for her and it made me realize that Heavenly Father was blessing me and I need to remember that Brynn was still here and I need to cherish that and not be mad that Zoe was taken from us.  We went back to the hospital the next morning and got through the next week before Brynn was released.  She came home weighing less than ever before.  She had lost a total of 25lbs since diagnosis and they really did not want her to lose anymore.  She came home with a feeding tube for her meds and it was very difficult to eat or drink for a while.  Her appetite was gone and her throat still hurt from all the mucousitis she had.    When they took the feeding tube out a couple weeks later she started eating better and better and now it's close to normal.  Her weight is slowly increasing and she is getting more energy all the time.  She started school with a tutor at our home last week and is amazing us with how well she is doing.  We had many offers to get her a new dog.  People are sooo generous and I didn't know when Brynn would be ready or if she would want another golden retriever.  Ronald McDonald house had gotten a labradoodle puppy in the summer and we spent alot of time with it when we were there.  Brynn mentioned that she might like that so it didn't look just like Zoe- and immediately the phone calls started happening as people were trying to find one for her.  We ended up getting one from another very generous person who breeds them and we have a 5 month old carmel colored labradoodle we named Suri.  Brynn and I still shed alot of tears over Zoe and Brynn being the softhearted girl she is worried that Zoe would think we had replaced her already.  I assured her Zoe would be thrilled she had someone to take care of her and make her smile.  Our friends that gave Zoe to us said that they think Zoe was here to get Brynn through treatment and as soon as she was done said you can take me instead of her!  As you can imagine I'm crying right now even typing that.  We will forever be grateful to them for letting us have her in our life and Brynn's even though it was brief.  We are home now getting bloodwork in Taber every Monday and don't go to Calgary until November 14th for scans.  I told the doctors I'm almost more scared now that we are done treatment and getting checked every 3 months.  They assure me it is normal but I don't know when it gets better.  We just have to live in the moment and have faith.  We have done all we can do physically and Brynn's little body has been through so much.  We have had clear scans since last January and just keep praying constantly that they stay that way!  It's funny how it's so good to be home and enjoy every moment with my family- yet think about and miss our family up at the hospital too.  There are so many people we pray for everyday and worry about besides our own daughter.  We feel so blessed to have gotten to know so many amazing kids, families, nurses and doctors up there.  If there is anything I would say to everyone with healthy kids, it's enjoy all the little things everyday.  Stopping your busy life to jump on the trampoline or play with them.  It's easy to get distracted by so much going on all the time- but it's so special to spend your time on what's really important!!!!:)

September 2011-High Dose Chemo and Stem Cell Rescue

Here I am sitting by my sleepy girl and can't believe I haven't written on the blog yet.  Today we are on day +13 of transplant which means it is 13 days after she got her stem cells.  We were admitted on August 24th and started high dose chemo on the 25th.  She first had 3 days of Thiotepa which is excreted out of your pores of your skin so you have to bath really well every 6 hours around the clock for 4 days straight.  She was such a trooper (as always) and never complained once as we woke her at midnight and 6am to put her in the bathtub and scrub her from head to toe.  After that she had 2 days of another drug- Melfalan and then she had a rest day before day zero- Stem cell day!!!  Both chemos were high dose- they said 10-12 times stronger than anything she has received so far.  Day zero Brynn once again amazed everyone as she got 2 bags of stem cells and you can feel nauseated or tightness in your throat but she sailed through it no problem.  They told us her counts might not come up for 10-14 days after.  She started getting mucousitis and was hooked up to a morphine pump to control the pain in her throat and mouth.  On day +5 we were so excited when her WBC were 0.1!  We told Dr. Lewis and he said I'm not jumping for joy yet- they could still go back down to 0.  The next day they were 0.3 and the day after that 1.0!!!! I told him " I NOW want to see the happy dance!!!!"  The very sad news what our friend Joey who had been battling for about 5 years went to ICU and passed away on Sunday night.  That really shook us up and Brynn was very quiet and sad for days.  She was getting cramps, nausea, and diarrhea after her counts started coming up.  She was down which is not like her at all and started saying and asking hard questions that I didn't have answers for.  Yesterday was Joey's funeral and Kevin had gone home to the other kids so I wasn't able to go- but we love their family and feel privileged to have known Joey.  We are just taking things day by day now and the cramps and diarrhea are gone (including bloody stools which scared Brynn and us) She still is nauseated and it's a battle for her to try to eat and drink things and keep them down.  She has done amazing they say and this is all normal- it takes a while for the appetite to return.  We just take each day and try to eat a little more than the day before.  Hopefully we will get to Ronald McDonald House later this week and then home in another week or so.  We feel every ones prayers on Brynn's behalf and know that our Heavenly Father is very aware of her and her needs.  We see little miracles happening every day!

August 2011

I can't believe how time has flown by this summer!  I thought when we were home more I would be able to keep up better with this blog and allot of other things!  We have had more time between treatments then we ever have this past year and Brynn has done remarkably well.  She hasn't had a fever since Easter Sunday so that has also been a nice break for us.  The last few months of chemo have just been overnight or a few minute infusion in Lethbridge.  Brynn has been able to go to Waterton, ride her bike and scooter around, swim in our pool in the backyard and just be a normal kid.  We were able to go out to Cranbrook and stay with Kevin's sister and visit little Charlotte and her family.  We pray for them daily- many times- and sooo enjoyed our visit and seeing them and well she is doing!  Brynn went to Kid's Cancer Camp with her sister Sadie at the beginning of August.  We postponed her chemo a week so they could go together.  Unfortunately Brynn didn't have as good of a time as we all thought she would.  Sadie had a blast- but Brynn wasn't with her age group and was quite homesick.  We didn't realize as we tearfully said goodbye that we wouldn't be able to talk to her later in the week when we called to check on her.  We were told she was fine and happy but we were not allowed to talk to her.  They don't know our Brynn though- and how she never complains and will pretend like everything is all right even if it's not!  We might try the family camp next year with our whole family!  When Brynn returned from camp we went right to the hospital to do the overnight chemo they rescheduled for us.  To our surprise her counts had dropped too low to go ahead with it.  She had been off GCSF for too long and her bone marrow was getting worn out from a whole year of treatment.  Brynn was quite devastated when they said we might not be able to finish her 51 treatment schedule.  They asked us to come back in a few days and have a meeting with the oncologists.  We came home and had a family fast that the doctors would know what to do and make the right decision for Brynn.  When we went and met with them they said their recommendation was to scrap the last few weeks of treatment and go right to high dose- which is an extra that is 10-12 times stronger than anything she has had- and that would more than make up for any missed treatments.  Plus she had some easier chemos left to do.  We felt very reassured and good about their decision.  We really felt that they had decided what was best and felt good to go ahead with their recommendation.  So hear we are- we had tests and scans all last week to prepare for high dose which we begin in a few days.  The blessings seem to keep pouring in as we received good news on all her tests and scans so far- everything looks clear and she is in remission.  One of her tests that checks her kidney function came back with a count of 28 when her last one a few months ago was 110.  We became concerned that her kidneys were only working at 1/4 of what they were and one doctor was saying we might have to lower her high dose accordingly.  As we were stewing about this but not telling her- the doctor came back and said he went and checked because he thought something wasn't right and it was a typo - it was actually 128 which is normal and better than last time.  Tears of relief came as we received this good news!  Today our town and both wards of our church are fasting and praying for Brynn as she starts high dose this week.  They have told us what to expect for side effects and it's going to be a tough month up in Calgary- but we know she can get through it and we will receive the help we need to get through it.  She looks so great right now- hair is growing back- color in her face(actually a bit of a tan!) and she feels so good- it's hard to think we are going to knock her down and make her quite sick again.  But the end is near and we are hopeful that the high dose will be worth it.  Thank you all again- you have no idea how much support and strength we feel as we carry on.  We are truly blessed through our trials!

June 3, 2011

Well, Brynn got great news on all of her tests and scans!  We are very relieved and know that we are going to sit on pins and needles for every test from now on.  It took me a while to want to write about it- since our good friends did not get such good news it's a real struggle of emotion.  We were devastated to hear about her- then extremely nervous when our scans were two days later - relieved and thrilled when ours are good- but still so sad and almost guilty feeling that ours were good and theirs were not.  You have such strong relationships with other families that are going through what you are.  Their hurt is your hurt- and their triumphs are your triumphs!  For now we will just keep praying for Charlotte every day- many times a day.  Brynn wanted to send a package to her which we did yesterday.  She loves that little girl so much and we are so grateful that we had the privilege of meeting them last year when I was still in shock from Brynn's diagnosis.  They, and many others have helped our family so much to cope with what we are going through.  When you stay at Ronald McDonald House together for months, eating together, playing bingo together, you really feel like family.  Anyway, we want to let everyone know about Brynn's good news, and as happy as we are about it- our hearts are still breaking for our dear friends.

May 24, 2011

I can't believe how time gets away on me and how long it has been since my last post!  A week after my last post on Easter Sunday Brynn got a fever right before our big family dinner.  The dinner was at my brother Troy's house which is only a couple blocks from the hospital.  We dished her a plate and Kevin ate with her at the hospital.  The doctor came in and said, maybe you should let your dad cut your meat- we got your counts back and your platelet count is 2!  She had never been that low before.  We decided to get her first antibiotic in Taber and then head up to Calgary and get her transfusion up there.  She was fever free and feeling good for about 4 hours when Kevin headed up to Calgary with her.  I wasn't worried at all until Brynn called me about an hour later and said her fever was 40.3 and she couldn't stop shaking.  I was calling up to Calgary and they were calling Kevin.  They said to stop at Claresholm hospital and go to emergency there.  I gathered the other 3 kids and said we needed to say a prayer for Brynn.  Not even 5 minutes after we were done the phone rang and it was Kevin.  Her fever came down on it's own and she was sitting there feeling fine.  Calgary wanted to play it safe and bring her by ambulance the rest of the way.  I was wondering if I should get a ride and bring Kevin's truck up from Claresholm and Brynn said dad can just follow the ambulance- I'm fine!  Kevin said he could see her cute little head sticking up in the ambulance talking away to the paramedics in there.  She really seems to take everything in stride and is constantly amazing us and teaching us lessons along the way.  She said a few times can I get a prize when I'm done DOX?  Which is the worst chemo she's had so far.  Well she finished that one a week ago and we surprised her with an electric scooter- thought she might feel like a kid in the summer even if she's too tired to ride her bike!  We have our evaluations again this week and that always makes us nervous.  We have a CT scan Thursday and MRI and Bone scan Friday.  On Friday is the Relay for Life in Taber which my sister and brother's families and us put a team in.  We got shirts made that say Believe on the front and Team Brynn on the back.  They asked Brynn to come to the survivor banquet before and then to lead the relay and carry in the banner at the beginning.  We are hoping to get back from Calgary for that as soon as her MRI is done.  Sadie and her cousin Paige are doing it for one of their Young Woman goals for church so we will be sure to take lots of pictures at it.  Next week we start a new chemo that we have never had before and we are hoping it goes okay- they told us it usually is not as bad as DOX.  Funniest thing- last week we decided to be pro-active and go up to Calgary before the fever hit this time so we wouldn't need another scary ambulance ride!  Kevin went up because she needed a few transfusions and they just stayed at Ronald McDonald House to wait for the fever.  Of course for the first time- Brynn amazed us and didn't get a fever!!!! Her mucousitis wasn't as bad either- we felt sooo blessed. 

On a sad note today our hearts are heavy for our good friends the Amsings who we have come to love so much.  Their precious daughter Charolette had her MRI today after doing chemo and radiation and the results were not good news.  We feel for them and never forget them in our prayers- even Kade and Reese automatically bless Charolette in every prayer- at every meal.  We want them to know we are thinking of them!  I will try to let you all  know how Brynn's tests go as soon as possible!

April 17, 2011

Well today is Sunday and day 5 of chemo.  We are up in Calgary right now and she is getting her last chemo treatment right now as I'm typing.  This is her last round of Ifosomide and Etoposide and we are so glad.  She gets very high hydration 24 hours a day with this chemo because it is so hard on the bladder.  They also give her mesna twice a day which coats the bladder and protects it from bleeding.  Because of the insane hydration she is getting she goes to the bathroom every 1 1/2 or 2 hours.  It is always an emergency to make it to the bathroom so every couple of hours all night she shoots out of bed and says "Mom I gotta go right now!!!"  Then I jump up to unplug her IV and get her to the bathroom in time.  We are excited to be done this one!!!! Today she is getting a blood transfusion and then she has to hydrate for 24 hours so we can go home tomorrow.  The next chemo is the awful Doxorubicin and it is the last of that one! YAY!!!!!! That one is hard on the heart so she has to have an ECG and Echo done before that chemo.  We are so glad to be able to scratch certain ones off the list now even though we still have 20 weeks to go.  We hope we can get through the week without a fever and another admittance to the hospital but we are prepared for it. After the next round we have evaluation week again where we have all the tests and scans to see how things are working.  Last week we went to the spaghetti supper fundraiser for Zach Giesbrecht who is a 6 year old boy newly diagnosed in Taber.  Kevin and Kade shaved their heads again and we were all able to go as a family and meet them which was really nice. A few weeks ago, Brynn's uncle Corb did a benefit concert for us in Taber and had an overwhelming response.  It sold out and they had an auction that was amazing.  Kevin's boss bought a Calgary Flames jersey at it and then handed the jersey to Kevin.  We still are amazed at the support we continue to receive and feel so blessed to live where we do.  Thanks again for all your support! We will continue to try to keep you all up to date!!!!

March 2011

Well March was a pretty good month except for a little excitement!  First my oldest Sadie turned 14 and is going to Stake dances now and can get her learners! Crazy!!!!! We came home on the 5th and got to enjoy a few days at home.  On Thursday the 9th Brynn needed platelets and wasn't feeling that good so they told us to go to Lethbridge emergency because they would have to bring platelets out to Taber and it would be faster.  That turned out to be a big mistake!  We were in emergency from 4:30 until 9:30.  I was in tears because of frustration.  My daughter is neutrapenic (no counts) and we are waiting around with all these sick people coming and going.  I was ready to leave and take her back to Taber where the emergency is way less busy and they took us up to pediatrics.  Brynn gets really nervous to get her port accessed by new people.  I asked if they could call the nurses in the Cancer unit to come but they were closed.  They assured us that they could do it and it was the worst access we have ever had.  It was just mass confusion and when they are totally nervous it makes me really nervous.  They pushed the needle in way to far and continued to hold it down into her skin.  Brynn was crying and saying OW OW which she has NEVER done before!  By the time they were done, we were both in tears and I was on the phone to Calgary seeing if they had wrecked her port which would mean surgery to fix or change it.  They reassured us that it wasn't wrecked.  We came home the next morning and late that night she got a fever.  Thanks goodness we just left her accessed so we didn't have to go through that again.  We went and started antibiotics in Taber and then went to Calgary because Taber was full.  It felt good to be back at Children's where I can relax and know that they know exactly what to do.  We came home on Sunday the 13th and then had to wait to start chemo until her platelets were over 75.  Now that we are down to the last half of chemo,  the end is in sight and we just want to get going to the end.  It is getting more and more frustrating for Brynn and us when her counts are taking longer and longer to recover because her bone marrow is just tired out from so much treatment.  We are waiting 2-3 weeks to start week 29 treatment so it just prolongs treatment.  When we finally got to start on the 23rd it was Doxorubicin which is the hardest chemo on Brynn so far.  The last time she had it she had pretty severe mucoucitis and couldn't eat or even talk for 6 days.  We were nervous how bad it would be.  We all fasted and prayed that it wouldn't be as bad.  When she finished and we went home we just waited.  Just over a week later on April 1st she needed transfusions and had a bit of a sore throat but no fever.  We went for the transfusions to Taber and I called our nurse and told her she had a sore throat and her counts were zero.  She said to drive up as soon as she was done getting her transfusions.  Kevin and I questioned going up when Brynn didn't even have a fever yet but decided to listen.  We got the Calgary hospital at 7:00 that night and at 9:00 she spiked a fever.  That night there was a big snow storm and I was sooo glad I had drove up before that hit.  The next day Brynn's throat was a bit more sore and her bottom was getting sore.  They gave her some morphine and she just ate popsicles for about 3 days.  Then is all started getting better at once!  We thought her counts must be up because her throat sores were gone- but they took 2 more days to start rising.  The sores this time around were much more manageable and were were so grateful that our prayers had been answered.  Brynn even said- that wasn't so bad!  She is such a trooper!!!