Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Wednesday, December 18, 2013

Fun Stuff, Clinic, and More Fun Stuff!

Jordyn has been wanting to go ice skating for a long time. We took her to the Gallivan Center with Make a Wish a few weeks ago, and she has wanted to go back ever since, even though we only made it around less than one time... Anyway... She really wanted her aunt Ashlee to go with her, so she made a special trip up to come ice skating with us! This time we went to an indoor rink. It was a lot less busy, the ice was smoother, and we had a bunch of fun! We made it around at least twice, maybe more with both of the kids, and then we each took turns skating around while the kids rested on the side and clapped for us.

Make a Wish invited us along for a ride on the North Pole Express. We were able to take a little ride on the Heber Creeper, and rode it to the "North Pole" to see Santa Clause. It was a fun ride, and I think the kids enjoyed it and getting their tickets punched. The kids were able to sit on Santa's lap, and then they were able to chose a gift for each of them. They had a great time. If I remember, I will try to scan in the pictures that were taken on Santa's lap, and share them on here.

Hope Kids invited us to go see the Nutcracker dress rehearsal with them. Jordyn loved this both last year and this year. She especially loved dancing in the aisles like the dancers were doing on stage.

We had clinic on Thursday, and it ended up being a really long day. They have continued her on the new antibiotic that runs over an hour, and it seems to have made a significant difference in her counts. They are usually WAY higher, unless she is sick like over the week of Thanksgiving. Because of that, she is now back at 50% chemo, which is not preferred... They are going to have home health come out in about two weeks from her appointment to check blood counts and hopefully up her chemo again. Her port has been causing problems lately. (her port is what was surgically inserted into her body to make drawing blood and administering chemo, fluids, and other iv meds easier on her) The last time home health was out, she had to get a peripheral iv put in to draw her blood because her port wasn't drawing back, yet again... It still wasn't working when we went to clinic, so they had to order cath flow, which took about 1.5 hours to get up to clinic... Because it took so long, I had to figure out what to do with Jeremy since the wonderful person watching him had plans and I wasn't going to make it on time. Luckily, her son was able to stay with him, and I am sooo grateful for that!

Thankfully we got some fun out of it! Roxy the therapy dog visited while we were there, and Jordyn absolutely loved it!

Jordyn was surprised with a Christmas stocking that had some fun surprises in it, including her absolute favorite thing she got, lipstick... She actually does a really good job putting it on by herself without getting it everywhere! Lol!

We had a church ward Christmas party/breakfast on Saturday. It was yummy and gave the kids another opportunity to see Santa!

The kids had a dance recital at a retirement center, and both did really well! Jeremy even did a move he hadn't done before!

We went to Temple Square to see the lights with my little family, my sister, my mom and dad. It was cold, but pretty!

Thursday, November 28, 2013

Thanksgiving and fevers

Jordyn spiked a fever on Monday and was admitted to the hospital with low counts
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Happy Thanksgiving!!! We are on our way home! Thank you Angel Karen Krause e cute outfit and matching doll outfit!

Friday, November 15, 2013

A Big Thank You Post and a Little About Jordyn's Make A Wish trip

I can't believe I just posted 526 pictures from Jordyn's Make a Wish trip to her facebook page! The crazy part is that this is only a small fraction of the pictures... I just posted my favorites! I put some pictures in this post too, but not many compared to how many I have, so if you want to see more go to Jordyn's Facebook page I have been meaning to post pictures for quite sometime (our trip was on October 4th) but I have been pretty sick myself and spent some time in the emergency room, bed, and finally in an operating room to try and hopefully fix my problems. I am feeling a little better and mostly recovered from surgery now so I am feeling more up to posting than I have been. The pictures give you a hint of the fun and amazing time we had thanks to Make a Wish and Give Kids the World. It will go down as the best vacation we have ever been on and will ever go on! It was so magical and unbelievably good and healing for our family! It really was amazing and we were so touched by all the people who reached out to us and who played any part in our trip. We are so thankful to all the volunteers and others who served us and the love that they have that made such an experience possible! That is one of the incredible things that has come from this horrible cancer experience. We have been able to see how good people are, and how loving, giving, and how thoughtful, and prayerful people can be. Not just through Make a Wish, but through this whole entire cancer journey we have found these people, and have felt so blessed!!! We really couldn't have made it as far as we have without you all! Thank you so much from the bottom of our hearts for all that you do! You are the glue that holds us together on days that we are falling to pieces! We love you and are so grateful to have had you as part of our lives!

I want to name a few specific people who have gone above and beyond for our family... Karen Leabo Singletary (has been an amazing angel to Jordyn and occasionally Jeremy for a year, who has sent letters, cards, and gifts to lift our little ones spirits through this trial), Karen Krause (another one of Jordyn's incredible angels who has sent her love in the mail for the last year to brighten her days and spirits), Judy Thomas of Back to Basics School of Dance (Who threw an amazing fundraiser by sharing her time and talents and heart for Jordyn and also worked with her privately when she was too sick and compromised to dance with a normal dance class, and who has been willing to open her heart to other cancer cuties fighting this hard battle and help them out as well), Katrina Endrizzi (who threw a wonderful fundraising event out of her own home, she let her home be overtaken by donations and then on the fundraiser day by hundreds of people who were there to support Jordyn, who also spent lots of time and heart pulling it together to make it what it was)

I would also like to thank Jeanene Brown (for watching Jeremy on many of Jordyn's chemo days, sometimes for over 6 hours and occasionally watching both kids to help me out for appointments for myself. My children adore her so much! She even did my dishes once, and helped me clean my house when I was completely overwhelmed), Paula Fetzer (for taking the time and effort to watch my children when I need her too, she has been one of a few people who took Jeremy last minute for an unknown amount of time while I took Jordyn to the emergency room or clinic with a fever), Barry and Chris Bennett for your love as well as your generous financial contributions to help us out during this difficult time, our parents for taking Jeremy at the beginning and helping clean our house and being so willing to help and loving to us and our children while we go through all this cancer yuckiness, our siblings for their time help and gifts they gave Jordyn especially at the beginning, those who have donated to fundraisers both financially and with items, services, and time, all those who have brought us food, all of her nurses and Dr. Barnett, her home health nurse Cheryl, Clinic nurse Vanessa, clinic nurse Aubri, and I am sure I am missing someone, so if I miss you I am sooo sorry. The Primary in our church who brought Jordyn a special tree for our front lawn so she could watch the birds eat outside our window when she was too sick to go outside, the girls who brought her candy when she couldn't go trick or treating, the young men and young women for their generosity and hard work, the people who helped cover Jordyn's hospital room at the beginning with butterfly pictures and hanging butterflies, those who have donated crafts to Primary Children's as well as hat to warm her bald head last winter, those who have done CureSearch walks to get a cure for childood cancer, those who have participated in any way with Jordyn's fundraisers, Stacie and Andrea who are Jacob's cousins who brought her some cheer during the really difficult times last year, Kae Larson for also bringing her a bunch of cheer during the most trying and difficult times of treatment, all those who wrote letters to her and sent her packages particularly last year when things were so tough, thank you so much.

There are many, many others who have done big things to help Jordyn and our family out, and we are so grateful to you all as well! Thank you so much!

Sunday, August 25, 2013

August Clinic

Last Thursday at clinic was a LONG day... It was the first 6 hour plus hospital day we have had in a LONG time. The nurse couldn't get Jordyn's port to draw back blood, so they had to order some tpa(declotting med to get central lines working again) to get it working. The doctor talked with us and is concerned that she isn't getting the dose of chemo that he feels comfortable with, and would really like her to be getting more. The reason she is not is because her immune system tends to crash on higher doses. The oncologist suggested we try a different antibiotic because Septra (the antibiotic that she is usually on) can apparently suppress the immune system, and he thinks that might be why her counts have been so low. So we decided to try it, and we shall see, I guess. Jordyn's doctor makes sure he lets us know every time how good of a job we must be doing with the sunscreen, I guess a lot of kids come in burnt this time of the year, but we make sure to slather Jordyn up with sunscreen most of the time. We went to the infusion room and waited and waited. They ended up sending us down to RTU (Rapid Treatment Unit) before she got her tpa so that we wouldn't be late for our appointment for her lumbar puncture. We got settled in a room down there, and then they told us they were going to send us back upstairs because they were running behind and they wanted to get her tpa going while she waited. So we went back upstairs and got the tpa going and then waited for about 45 minutes for it to get her line working, and then we sent her blood work off, and went back downstairs to finally get her spinal tap chemo. We waited about 20-30 minutes to get her in. She woke up happy because she had the RTU's ipad still and was able to finish playing the games she played when she went to sleep. She really fought going to sleep. Usually the medicine takes her out pretty fast, but this time she fought it for like a minute and even when we finally got her to lay down, she was still trying to pop back up. It was strange to see her not just go out like the flip of a switch like usual. She asked for mac and cheese when she woke up, which they thankfully had. We went back upstairs for her iv chemo and for her iv antibiotic that we are trying out this month to see how her counts react to it. The iv chemo is just a push over 1 minute, but the antibiotic had to run on an iv pump over an hour.

We just arrived at clinic..

Here she is making an egg creature to pass some time while we wait

Jordyn was able to sit in the stroller to get her blood pressure taken this time. She liked that.

Getting weighed here, she is staying about the same weight wise, so the doctor is happy about that.

She is getting taller!

I am loving her hair and thicker eyelashes!

She loved to make silly faces at me this time at clinic.

I had to take a shot of the back of her head to show her gorgeous curls she has!

Jordyn and her doctor.

Jordyn and the child life specialist making purple snow

Here Jordyn is in the elevator playing with her purple snow on the way down to RTU.

Here we are waiting to go into the sedation room to get her lp done.

Here Jordyn is with Roxy the therapy dog. We get to see her at clinic occasionally and sometimes she even dances for Jordyn!

Love that they both have their tongues out! Lol!