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 https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917. 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!

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!

July Clinic - Playing blog catch up...

This is the most behind I think I have ever been on the blog... My apologies! I have been making sure I get pictures to record what is going on, but I guess I have let life get in the way of posting on the blog... I am going to try to catch up today hopefully...

The clinic before July they had run a test on Jordyn's blood to see if it had an enzyme that made her extra sensitive to the methotrexate she takes on Thursday's. They have tested for two different things before, I think, and it came back that she didn't have that enzyme that made her sensitive to it, but she still seems to be have her immune system more suppressed than the doctor wants. He would feel better if she was on a little higher dose of her chemo.

There is an upcoming fundraiser for Jordyn and our family. If you are interested in donating items, money or coming to it, we would really appreciate it!

Oh, and to update on Jordyn. She hasn't been feeling well since yesterday. She had a fever and we were in the emergency room last night until around 2 am. They sent us home after a dose of antibiotics. Jordyn ended up being pretty sick in the night and woke up with a fever still. She slept all day pretty much only waking up for about forty five minutes. She woke up at about 5:45 finally. I worry when she throws up because of the other condition she has that can cause severe acidosis in kids like her, which can be very scary and dangerous.

Clinic and some Fun!

I feel like it has been a long time since we have been able to do much fun things, so these last two weeks have been a ton of fun. Jordyn is already tired most of the time, so she has been completely exhausted from all that we have been doing, but loving every second of it. We took her camping over the weekend with our friends and her best friend, and she had the greatest time ever. (I tried to post camping pictures on here, but they wouldn't upload...) The biggest change I think is that she actually takes a nap most days. We took her to clinic on Thursday and her ANC was 600, which is still lower than they would like. The doctors would love to keep it around 1000, but she is continuing her chemo at this point. I personally think they are worried about having her off of the chemo for too long of a period of time because that is what is keeping the cancer away and so they are keeping her on even the chemo even though her immune system is low because she has spent a lot of maintenance off of chemo because of a low immune system and that is kind of scary if you ask me. Anyway... Here are some pictures from clinic.

Pardon the size of the pictures... Blogger changed the way you do pictures and apparently I don't know what I am doing...

Here she is about to be accessed. It was not a good poke because I forgot to put the numbing cream on her that morning... She ended up screaming when the needle went in... I can see why though, it is a big needle and it is in her abdomen... I felt so bad...

Getting blood drawn so we can know what her counts are.

Doctor listening to her back

She loves her doctor!

They play so well together. He really cares about the kiddos!

Here she is getting her chemo. The vincristine is a fast push over a minute.

Playing with train tracks at clinic (I wish it wasn't on the floor, but I couldn't convince her to keep using the table...)

ANC 800

Jordyn's ANC needed to be at 700 to restart chemo and it was 800 on Friday, so she is now taking her oral chemo again, but is on half the dose because it took her immune system out at the higher doses. Now every week she will have 5 1/2 less pills to take, and we are hoping she will be able to keep her immune system up so that she can live more "normally". (Maybe normal is to strong of a word... Normalcy is a far cry from where we will be, but at least we will be closer to a cancer maintenance "normal".) She will have clinic and iv chemo next week, and we should hopefully know then how her counts are doing, and if she is maintaining like the doctors want her to.

Jordyn's Video

Sorry I am kind of late posting this... I haven't been feeling the greatest so I hadn't worked on it like I had hoped to. Here it is! Jordyn's Video