Today was Brynlee’s check-up at Primary Children’s. She had labs drawn, an Echo done on her heart and a visit with doctor Wright in the clinic.
The older Brynlee gets the more she realizes that the hospital is not the great play place it use to be. When she was in treatment she loved going there, she was only two and thought it was great to sleep at the hospital (most of the time). Now that she no longer has her central line, needles are scary and she HATES getting her blood drawn! This was our biggest battle today. Normally daddy goes with us but he’s out-of-town for work, so mommy didn’t do as great of a job I guess in helping Bryn feel secure. Once they called her back to take her blood she completely freaked out, kicking and screaming, the works! I have never had her do this, so I was kinda freaking out as well. Long story short, she survived and thanks to the child life specialist, we got her labs done. Only after all was said and done Bryn realized it wasn’t so bad. Let’s just hope she remember’s that on the next visit.
Up in clinic after her labs and Echo were done, we had a check-up with Dr. Wright. We love her! Everything looked great except for her urine. It’s always the urine that comes back crazy. This time it was red blood cells and too much protein. So after discussing the issue further with the doc we decided to try for another urine sample, but of course Brynlee doesn’t have to go again. Another long story short, we decided to leave and get a sample done at Riverton’s Primary Children’s hopefully on our way home after stopping for lunch she would have to go again by then.
So after two hospital visits and two urine samples, Dr Wright called later to say her second sample looked a lot better and further tests at this point would not be necessary, in less she starts having other symptoms. Yeah for having clean pee!
All said and done, we should not have to go for another visit for 6 months. Brynlee is doing great and we’re so thrilled with how well things are going. She continues to see her eye doctor and we are hopeful that her eye will continue to improve as well. Thanks for all the love and support we have received. Brynlee is doing great!
After the scary needle. It’s the only time I wish she still had her line. Blood draws were a lot easier then.
Atleast I got a pink bandage!
Getting my arm hug in the Clinic. I can’t believe how much she has grown. This picture is so diffrent from her first visits at Primaries.
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I have been such a slacker keeping up with Bryn’s blog, a lot of people have been asking how she is and today was her cancer check-up so I thought it would be a good time to catch up. Brynlee has been doing really well with the only problem being her weak eye, that we are still trying to work with. We have been patching her strong eye, forcing her weak eye to have to work. It seems to help because when we stop the patching it gets bad again. She’s not a huge fan of wearing the patches, so I usually have to bribe her with what we call a patch treat. It’s usually a sucker or some other form of candy that she gets after she has worn it for most of the day.
A patch picture with a cheetos face
All went well at Bryn’s check-up today, she now only has to see her Oncologist every 6 months. She will be in remission now for 2 years this November. Time is flying by and I can’t believe it’s really been that long. Her doctor did call me this afternoon with some concern for her urine test that came back. She said it had a lot of bad stuff in it. So we are having it retested tomorrow to see how it looks. At this point we are hoping that it’s a simple UTI but we have to be careful and check out everything to make sure she’s clean and has no other side effects. More on that later when we get some results.
Brynlee turned 4 this last March and she is growing up so fast, she has been such a joy to have we couldn’t imagine life without her.
Brynlee turns 4
Another mile stone is that we were finally able to get her hair into some pig tails. She has been asking since she was bald when she could get pigtails again. So I tried it a couple months ago and with a little help from a lot of hairspray, we made it happen. She was so happy!
As most of you know we belong to an organization called Hope Kids. Well last saturday we had our Hope Kids 5k and Bryn walked with us. She said “mommy why are we walking” so I told her it was for hope. I told her how thankful we were that she could walk and be with us and that she is a survivor. And that we have to continue to have hope that she will do well and that others just like her can be survivors too.
Cinderella was at the 5k
Walking with daddy
Walking for HOPE
Brynlee and Sadie with Snow White
Brynlee the butterfly
Our family is doing well and we’re so thankful for the love and support of our family and friends. We would not of made it this far without your help and prayers over the last 2 years. I could not keep up with all that was done for Brynlee and our family during her treatment. There was just so much love and support that I couldn’t keep up with the “thank you’s”. To this day I wish I would have been better about sending out notes to each of you. Please know that we are so grateful for all that was done for us, and that we could not have gotten through it all with out your support. I pray that all who helped and gave of themselves will be blessed for their actions. I will try to be better about keeping her blog up-dated. Thanks again for caring.
The Card family
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I took Brynlee for her 6 week check-up today. They did a full work-up on her with the CT scans and blood work. Her blood counts are a little off and they found a spot in her sinus. The doctor wasn’t too worried at first saying that because she was sick last week and she now has a cough and runny nose, that was probably the cause of the spot and blood work presenting differently. So I went home not too worried until the doctor called me and said she took a closer look at her scans from today and compared them with scans from her original diagnoses. There is some concern because the spot is in the same place as the original spot that they found in her first scans. So now here is the hard part, we have to wait 4 weeks to take her in for more blood work and scans. The reason for the wait is if it is just because she has a cold we need time for it to drain and clear. So when she goes for her scans it will be clear. If it is the cancer it will still be there. In the mean time we watch her close for any lumps or fever, which could also be signs that it is back. The doctor said she isn’t too concerned, we just need to check it out. Well I’m the mom and so I’m trying to not completely freak out but am very worried. But this is why we have frequent check-ups, to make sure we catch it if it does come back. So now we wait and hope for the best. But it does not hurt to please remember her in your prayers, we would be very grateful for the support. We will keep everyone posted when we know something.
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Last year when Brynlee was in the hospital we took her on many, many walks. On one of our walks we noticed an area where they had people working trying to get people to sign-up for the Festival of trees. Jeff said “wouldn’t that be neat if we could do a tree for Brynlee” at the time there was no way we could have taken that on with everything else we were dealing with, but walked away talking about how someday we would do that for her. Well the someday has turned into today, we have signed-up to do a tree to honor Brynlee and all that she has been through.
If you don’t know anything about the Festival of Trees it’s because you probably don’t live in Utah. The Festival of trees is put on every year at Christmas time and it is a sight to see! Hundreds and hundreds of trees and other Christmas crafts are donated and are usually in honor or memory of someone. All of the trees and other things are displayed for a few days at the Sandy Expo center, you can buy tickets and go look at everything displayed. We did this with our kids last year and it was amazing! On opening night they have an auction and everything is sold, you can buy a ticket for this night as well and bid on any of the things there. Every single penny goes to Primary children’s Medical Center. Jeff and I feel we need to give back to Primaries for all they have done for Brynlee, and to Honor Brynlee for all of her accomplishments.
So the reason for this post is to let you know that we would love your help in this project. In order to participate we have to purchase the tree, decorate it and most of the time there are other things around the tree that are for sale with it. For example, when we went last year there were simple things like toys and gift cards up to really big things like whole living room sets with fireplaces. It was amazing to see what people had donated. So we thought we would spread the word to see if we could get some help. Our theme for our tree is “Baby It’s Cold Outside” We plan on doing everything in winter colors with a warm quilt and hats and other things that would go with the theme. I was even thinking how neat it would be to get things like lift tickets for a ski resort. So depending on how much help we get depends on how far we can take this project. We just want you to know your welcome to become a part of Team Brynlee and help give back. The best way to donate would be to just click her donate button on this blog and donate, leave us a little note letting us know you want to help for the Festival. Or you may donate directly to us, call me if you have any questions, ideas or would like to be more involved. Donations of particular items can be donated as well, like gift cards or things that would go with our theme. Just make sure everything donated is new. We feel like we have been so blessed and supported through Brynlee’s whole ordeal, we would love to see that continue as we give back to Primaries.
The Festival will run from December 2-5 with opening night on the 1st. For more info on the Festival you can go to www.festivaloftreesutah.org
Brynlee’s tree will be in aisle J spot 13 so go check it out if you can. You will not regret attending this great event! It’s an amazing way to bring that holiday spirit! Let me know if you would like to help, thanks so much! Jeff and Jen 801-372-1353
Just a few pictures of Bryn doing crafts and playing at Primaries during her long stays there. The hospital really does a great job at helping them feel like their normal and can still have fun.
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The HopeKids 5K was a huge success and we had a great time!! Team Brynlee raised $450 and the whole group raised over $24,000. So a HUGE thank you to all who donated! You know who you are and we love you for it! Not only did we participate in the 5K but they had a lot of other fun things to do. Lots of food, fun and entertainment for all who joined with us that day. A big thanks to Elliot, Lisa and Keith who ran with us, thanks for your support. And to our family that joined us to help watch our kiddies, that’s a bigger job than most will ever know:) So here’s pictures from the big day and the next post will be all about our next fundraiser to help Primary Children’s. So watch for that. We love Primaries and want to do anything we can to give back. Nothing can compare to saving our sweet girl, but we’ll do what we can!
Our team that ran the 5K
The shirts we wore. We did them in gold…it’s the color for childhood cancer awareness.
Fun with bubbles
The Princesses were even there!
Lots of Starwars people too
And of course, face painting
And last of all Kade staying real close to the food:)
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We only have one day left to raise money for the HopeKids 5/k. “Team Brynlee” is doing awesome!! Thank you Thank you, to all who have donated. We never thought we would be near the top of the list as highest team, but were only 4th from the top right now. If you go onto the web site to donate and you look at the top teams, the first two teams don’t count as the top teams. They are the leaders of the group and their money counts but they are not in the race to get top contributor. The top three teams will win prizes I guess. We are just excited to be up near the top!! So I thought I would put one last plug in to see if we can get enough donations to make it into the top three. If you have a minute and a dollar or two contribute to Team Brynlee at http://www.active.com/donate/uthopewalk select our team and donate what you can. Any amount adds up to something great, if everyone reading this would do it. Thanks sooo much for all everyone does for Brynlee. She’s doing awesome!!! I will post pictures after the race. But here is one of her wanting her picture taken on the first day of school. All the other kids were getting their pictures taken and she needed hers done too, even though she doesn’t go to school🙂
I love this girl, and am so glad she’s here with us still……a miracle for sure!!!
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