Well- once again I have gone a month without writing on the blog. I was told by a few people lately how long it's been and I don't know why I can't seem to find the time. We have had an awesome past few weeks and I'm amazed how much busier it is being home with 4 kids than being in the hospital with one! We have had a few colds and sicknesses go through our family but Brynn hasn't been one of them and she hasn't had one fever since we left the hospital in September! We are so grateful for that and continue to feel the prayers of so many.
I'll fill you in on our lives this last month- She was able to go to her first sock hop at the school for Halloween and trick or treating too. She continues to train our puppy and that has been a great thing to keep her from missing Zoe too much- still doesn't fill the void though! We have a tutor coming to our house everyday and doing school work with Brynn. She is doing amazing and taking the same tests as her classmates. Her teacher is so surprised that she is getting in the 90% range on her tests and says she is at the top of her class! We are so glad that she is able to keep up with her schoolwork and she looks forward to joining her class after Christmas! Two weeks ago Brynn came to us and said she wanted to do 4H and get a calf! She talked us into it- had some very good arguments- and we went to buy her one. The friend we were buying the calf from said they really shouldn't be alone or they might quit eating so we decided to buy two and let Sadie do it with her. Our neighbors were kind enough to offer their barn across the street and their 12 year old daughter joined 4H as well. Brynn is loving the responsibility and going over to feed the calves twice a day. She loves all animals so much and knows what we do at the end of 4H when we sell the steer and what it is used for. I'm sure there are going to still be alot of tears when the show and sale come!
We had all her scans 2 weeks ago including a PET scan which is very microscopic and scans your whole body. I was so nervous as this was our first scans since we finished treatment and her body is done with the chemo treatments. They said her MRI, Bone scan and CT were all good but we had to wait a few days to find out her PET scan results. We were waiting for the phone call and didn't hear anything so I started thinking that they didn't want to call because the news wasn't good. Finally the next day I couldn't stand it anymore and called and they said our nurse was sick and that was why she hadn't called but they would check and see if the results were back. That was the longest few minutes of silence on the phone as I waited and they read the results to me. They were all clear and there was no signs of anything on the PET scan!!!!!! I started crying and so did the nurse! Then Brynn saw me and said "Oh no!" I quickly told her they were happy tears and everything was good! It was honestly the best gift we could have recieved and we felt so humbled that our prayers had been answered. Now we just have to go through that every 3 months for the next two years! At least we can relax and enjoy Christmas this year and just live in the now! Right now I have a healthy happy daughter and we are going to have the best Christmas and be home for the whole month of December! That is something that our nurse JoJo taught me- that each day you just live in the moment and don't look to far ahead. It can be a hard thing to do but you sure enjoy life more when you aren't living in tomorrow!
Last night we went as a family to the Christmas Carol play with the kids cancer foundation at the Max Bell Theatre here in Calgary. It was such an amazing performance and the kids had so much fun. It was good for Sadie and Brynn to see some of their friends from Kids Cancer Camp that they met in July. What a fun night and a great tradition to do every year! At home we have a church nativity pageant that we always attend and my mom received a call asking if her family ( which includes my brother and sister's family as well as mine) would be the actors for the pageant this year! The kids are very excited and Brynn says she just wants to be where the animals are -so we think she is going to be the stable boy who takes care of the donkey. We will make sure to get pictures and put them on here!
We have a very exciting milestone in the morning! Brynn gets her IVAD taken out that she has had in her chest for the last 16 months! This is one surgery she is excited for and Dr. Steve said he would even save it for her to take home if she wanted! So exciting:)
Well, I will see if I can get on here before Christmas again-I apologize to those who follow this blog for how little I post on it and how random and jumbled my thoughts are when I finally get around to typing late at night when I am so tired! We continue to pray for our friends who are struggling and haven't received as good of news as we have- we want them to know how much we love them and they are always in our thoughts!
Tuesday, November 29, 2011
Thursday, October 27, 2011
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!!!!:)
Tuesday, September 13, 2011
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!
Sunday, August 21, 2011
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!
Friday, June 3, 2011
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.
Tuesday, May 24, 2011
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!
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!
Sunday, April 17, 2011
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!!!!
Friday, April 15, 2011
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!!!
Sunday, March 20, 2011
February 2011
February we had a great month! Brynn finished her week of chemo on the 6th and we got to go home for 2 weeks off. Brynn felt good and we were asked to participate in the Children's Hospital radiothon the next Friday. It was Reese's 4th birthday that day (the 11th) so we decided we could make a trip of it for her birthday. They were so kind to pay for our hotel and the hotel gave us free supper and breakfast there. When we arrived at the hospital we were all wearing our LIVESTRONG shirts that we got for Christmas from my family. I think we were the largest family they had there! The kids were given stuffed animals, coloring books and there was a whole spread of food for us as we waited our turn. There were two different radio stations there and they both interviewed us. When they called us for our turn they were scrambling to find enough headphones and chairs for everyone to hear. They asked us all about diagnosis and how it has effected our family. We were all keeping it together pretty well until Brynn started crying telling how much her family has helped her. We were all in tears after that- including the radio announcers! She did a great job and we were so proud of her. When we were done our interviews they brought an ice cream cake out for Reese and we all sang to her. It was so fun to celebrate it there! They gave Reese a build a bear and then we left to the hotel. They hotel had treat bags for each kid in our room and a birthday card for Reese. The kids had a blast swimming in the pool and we had it all to ourselves. It was a great weekend to just have fun and be together as a family. Brynn continued feeling well and made it through the whole month again with no fever! Mom was home and feeling more normal each day and things were starting to get better when I was feeling at the end of my rope for a little while! The last week of February we were supposed to go back for chemo and it was Family Day and no school the whole week for reading week. I was kind of sad to leave when the kids were going to be off school and because of an RSV outbreak in the hospital no visitors besides parents were allowed so all coming to Calgary was silly. We got counts checked and Brynn was too low to start so they decided to wait and check later. We had a fun family day sledding and having a wiener roast with my sister's family. Sadie's birthday was the following Tuesday and wasn't sure when we were going to have a party because of me being in Calgary and having basketball every weekend. She had one weekend off- that weekend- and I was able to be home so it was perfect. We got together with some of her friends that also had birthdays in March and had a dance party! It was so fun and they had a blast. We hired the seminary teacher to DJ it and he had a black light so they wore white and put neon paint on everything to glow! It turned out really fun! Brynn came with a few of her friends and had so much fun! They played some games too and when they were doing the limbo- poor Brynn was leaning back going under the bar and her wig fell off! Of course she just laughed and was such a good sport! The next day was my birthday and my friend Kristy took me for lunch and pedicures. Kevin made a big steak and shrimp dinner for me at home and it was great! What a great month we had to recharge our batteries!!!! Brynn hadn't slept in a hospital since the end of December....Awesome!
Friday, March 4, 2011
January 2011
Well this is attempt number two of this post! I was almost done and my laptop at the hospital died because it wasn't plugged in-uggh! Anyway I'm almost caught up to the present and it would have been easier to have started this last summer- but I guess better late and more brief than never at all! Well as I said Brynn was able to enjoy New Years at home with us and her best friend Kaylee. We are amazed at how every holiday and major event she is blessed to be home for it! As we were enjoying New Years eve my brother Troy was with my mom at Lethbridge Hospital getting her admitted for infection. She stayed up there for over a week and then came home on the 10th. That was also the day Brynn was to start chemo in Calgary. It snowed and the wind blew alot the night before and school was cancelled and the roads were terrible. I was nervous to drive up so Kevin offered to take Brynn and then I was home if my mom needed me. It's a good thing I stayed because mom's third day home she was feeling awful again and I called my friend and doctor Ryan Torrie and he took mom over even though he wasn't her doctor. I feel so blessed to have him in our lives- he has been a lifesaver! He did a bunch of tests and kept her in Taber hospital on antibiotics. It was so nice to feel like someone cared if my mom even got better. She knew most of the nurses, had her own room, and just felt more comfortable than in Lethbridge. We didn't know that she would be in there close to 3 weeks! Brynn came home from Calgary and got 2 weeks at home. Her nurse Jo said to enjoy the next month or so since she was getting easier chemos and we would have a bit of a break from all the nasty side effects. Brynn was able to go to a couple days of school and have sleepovers and even go swimming. She was so excited to swim some laps! She was tired but had a huge smile on her face! There was a big basketball game called rivalry night that her sister Sadie was playing in. They asked her to be an honorary team member and had her wear a jersey(which hung down to her knees) and they had a little scrimmage at the beginning where they told the other team NOT to touch her and passed the ball to Brynn and she got to score the first basket! (and did it on her 2nd shot!!!) The crowd went wild! They also had a cake auction to raise money for the athletic program at the school. They have done so much for us and we wanted to give back. We talked to Crazy Cakes from Lethbridge and they were excited to make a cake that represented Brynn and what she liked. Her cake went for the most money- $600! Her Grandy (Kevin's mom) bought it so we all got to eat it too! It was an awesome night and Sadie won her game too! They were playing the Taber grade 9 team and Barnwell only has 3 grade 9's on their team. They were down by 11 and came back and won by 8! Brynn was doing well so I was going to see mom each day and taking her for tests and scans in Lethbridge. Brynn didn't have chemo again until the 31st and I took her this time and we stayed at Ronald McDonald House. She wasn't admitted for this particular chemo so we just would go each day for a couple hours and then were able to do whatever the rest of the days. It was nice to see our friends at the House we hadn't seen for a while. It's amazing how we love being home but miss the close friends we made in Calgary and it's good to see them when we come up. Everyone was happy to see Brynn walking on her foot because they all saw her during radiation. We were so happy to see Amsings there and little Charolette who loves Brynn. We also got to go out for supper with Davidson's and another little friend Chloe! It's amazing how little kids just gravitate to Brynn. They are drawn to her sweet spirit and sunny personality! And who could blame them!
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!
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!
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!
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