Sorry I haven't been posting much

I have been doing more updating on the facebook page if you are interested in checking it out. Here is the link again: We would love more fans on there as well, so spread the word and get people to like her page! Please, and Thank you!

Jordyn had an appointment and her counts were still low (ANC 400), so she has been taken off chemo pills for 2 weeks at least until her counts come up. I worry when she is not on chemo, but at the same time, I adore it! She has so much energy, and I swear, I hear her giggle in those times so often it makes my heart happy. She really just isn't as happy when she is on chemo, and she definitely doesn't have as much energy. It is hard though because it gives me little glimpses at my child as an almost normal child that she hasn't been able to be for almost a year.

Jordyn and little Jeremy both managed to catch a cold this week, and now I am coming down with it as well. We got out more than we probably should have and now we are dealing with it. Hopefully they get better soon. They both sound completely miserable, this is a bad cold... Thankfully Jordyn has yet to spike a fever, so no hospital visits yet. Fingers crossed it stays that way....

Jordyn made her wish, if you care to see the pics from that, check them out on facebook. They are pretty cute I think!

This next week is going to be a hard one on me, I think... Jordyn's anniversary of her diagnosis day and her crazy week last year is coming up... I think I am going to be a complete mess this next week... It was exactly a year ago today that I started having a really bad, foreboding, worried feeling about her. She was admitted on the 9th, and she was diagnosed on the 12th.

I figured a fitting thing for this blog post was to share some of the old pictures from this last year of some good and bad times she went through.

I am also going to try to finish up her latest video by the 12th to share with everyone on here and on facebook.








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Clinic and other things

It has been a fun, crazy, busy month since I last posted.

We took the kids to the dentist. Jordyn got her teeth cleaned, and then she held Jacob's hand and my hand when we got our teeth cleaned and told us it was going to be okay.

Jordyn was hospitalized because she had a fever. On a Monday, she had a fever, so I took her to clinic. Her counts were okay at anc 800, so we were able to take her home after some iv antibiotics. The next day she still had a fever, so we took her to the er, and her counts had dropped enough that they admitted her to the hospital. It ended up being a three day stay, and we came home with her on iv antibiotics. When she was admitted, they had us put her chemo pills on hold until her counts recovered. It was almost two weeks that she wasn't getting chemo. By the end of that time, she had sooo much energy. I sometimes don't think I always realize how much energy and life the chemo sucks out of my child, and this was a reminder of that.



We had agreed to do Hyundai Hope on Wheels at the Salt Lake City Marathon that Saturday, so I was super nervous taking her out because I knew her counts were low. It ended up being pretty fun, even though it was super rainy. Jordyn got to put her hand print on two art canvases and one of the doctor's lab coats. They tried to get pictures of her and some video, but Jordyn was being really shy and just tucked her head into my shoulder.

We got our little family's picture, and we were also able to talk with a fellow cancer family. It was really nice to chat with another cancer mommy.



Jordyn recently had a dance recital. It was fun, but definitely a bit nerve racking for me with there being so many people there. She was super cute, and she had a lot of fun on the big stage, and I am really proud of her!

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I uploaded a video of it to youtube. The quality didn't stay what it was on my computer, so it is kind of hard to see as well as I would have liked, but here is the link if you are interested in watching her do her dances.

Jordyn was pretty excited last week when it snowed and she was able to make a snow man.

Thursday was clinic. They had her start up on her chemo pills again, and they plan to check her anc with home health in 2 weeks to see where she is at and how her immune system is holding up with the same dose they had her on that made her drop the first time. Jordyn really wanted to wear one of her princess dresses to clinic, and I let her. She got so excited every time someone said something about her dress.



Jordyn was SUPER brave that day. Usually, Mommy holds her on her lap when she gets accessed (poked with the long needle), but I was able to talk her into letting me hold her hand instead so that I could take a video for her uncle that he had requested of her getting her medical like stuff done. She did so good and was sooo proud of herself and she just knew uncle Jon would be proud of her too.

She played iwth green snow while we waited for her chemo. She also got the purple crown she is wearing that day in clinic and has worn it pretty much every day since then.



One of Jordyn's amazing angels sent her some fairy dust, which she was super excited about. (She is always excited to get anything in the mail, especially from her lovely angels) We did a mini photo shoot of her playing with it outside.









I never thought that maintenance would be as stressful as it has been on me. It is really strange being in this place where we are kind of in between cancer and normal. She is doing pretty well. Since starting her chemo again, she has been pretty tired lately, but is hanging in there.

FINALLY a new blog post!!! (and lots of my rambling thoughts....)

Sorry I have been such a slacker on the blog lately... I have just been in kind of a funk lately and haven't really felt like doing it... I don't really have a good excuse, other than not wanting to... Feel free to skip my rambling if you would like and jump to the part that starts "Her last appointment..."

For some reason, this month has been rough on me. Part of it, I think has to do with Jordyn and her steroid meltdowns which are hard because they turn her into a much different child. When she isn't having a meltdown, she is still a wonderfully amazing child. In fact, today, I asked her if she was my messy little monster, or maybe a messy little monkey, and she responded, "No, I am just your sweet little girl!" and proceeded to give me a big smile and a hug. It was pretty cute. Also, Jordyn's little brother has been having a hard time sleeping lately as well, which adds to the stress. He keeps falling out of his toddler bed, and I trying to decide if we can really afford to get him a larger bed that is harder to fall out of. He often ends up on the floor when he actually goes to sleep. I also think a lot of the stress is from everything we have went through that I haven't really allowed myself to process and it is finally creeping out. I am also realizing now that we are almost in a position that we can do more things, I find that we have missed out on a lot and may be at the point where there isn't anything to do or anyone to do it with. I think that throughout her treatment, I have occasionally reached a point where I just lose track of time and am unable to communicate with people like I should as a result of everything. For example, I get really bad at responding to messages and comments... Sorry if that has happened to any of your messages or comments... Sometimes that just seems like too much to deal with, and gets lost in everything...

Anyway... I wanted to say thank you again to everyone who has helped us out in any way. I get so caught up in everything that I feel like I am never able to completely express to everyone how incredibly thankful I am, we are for how many blessings and service we have received that has helped us get through this, and sometimes just survive. I want to thank people who have written to Jordyn, sent her packages, prayed for her, helped with fundraisers, told us they were thinking about us, prayed for our family, been amazing angels to her (really really appreciate this one, more than you could ever know! Thank you all!), liked her facebook page, given us hugs when we were at our breaking points, babysitting Jeremy and occasionally Jordyn when I need to get out of the house or when Jordyn has chemo, been a friend and talked with us, brought us meals, sent us cards, volunteered to help, done anything to spread awareness for childhood cancer, my fellow moms who have cuties with cancer (don't know what I would do without them... They are some of my best friends, and most of them I have never even met in real life), people who have fasted for Jordyn and our family, who have given Jordyn and I priesthood blessings, read our blog, and anyone else who has given of your time or resources to help us out and serve us. We are so grateful, and I know there is no way to ever repay all of the kindness we have received. So Thank You All!

Anyway... On to Jordyn...

Her last appointment was a bit of fun and a bit of stress. I have been noticing that the way she walks and especially the way she runs has changed and is way more stumbly than it used to be. We had an early physical therapy appointment to go to because of a clinical trial she is in that is supposed to help determine the effects chemo has on children short term as well as long term. The physical therapist says Jordyn is pretty strong and very smart, but noticed the same thing I have been noticing when she had her run. They had her run for 6 minutes and measured her tiredness and how far she was able to go, but also watched how she ran. There were a bunch of times near the end that she just about ran into the wall, and at the very end she stumbled to the floor. It was definitely a big change from how well she did last time she did this test which was sometime before her delayed intensification she had in December which was completely awful chemo. The chemo she gets at clinic now is Vincristine and it is known to cause problems with kids and how they walk. They don't worry about it usually until it gets really bad, and at that point they look at alternatives to the treatment plan. There are some kids who have lost the ability to walk with this chemo... Thankfully I think Jordyn won't get to that point.

These first few pictures are of part of her physical therapy appointment.







She was so happy the therapist let her play in this car for a minute, but not so happy to have her pic taken...



It was one of the longest breaks we have had from clinic before and so Jordyn was pretty anxious and scared about it, especially her poke...





Here she is getting her chemo. She was so glad they had otter pops this time.



The next two pictures are of the medicine she took all at the same setting just in different backgrounds... This doesn't include the morning steroid dose, or the iv chemo she got that day...



Jordyn has gotten to the point where she doesn't even need my help with her daily medicine, just her Thursday meds that there are way to many of. She does pretty amazingly for a 4 year old, if I do say so myself!

Maintenance...

We are finally in Maintenance! That is wonderful because it means we can do a few more "normal" things. Jordyn won't have to be as isolated, and that will be really nice. The reason for this is because her immune system is supposed to stay in the range where it can fight off infection better, where her last chemo treatments severely dropped her ANC (Immune System)and made her more likely to catch something if she was anywhere near someone with an illness. She will still have to go to Clinic or the Emergency Room every time she gets a fever though, and will still be hospitalized if her counts are low and she has a fever which could happen because of low counts or from an illness.

I am actually kind of nervous for this phase because even though everyone says it is easier, I don't know what exactly to expect, and it lasts A LOT longer than the other phases, and she has to take WAY more pills, including a daily chemo pill, 5 days a month of steroids, and a super high dose of another chemo once a week, as well as going in once a month for chemo, and every three months for a lumbar puncture. So, I am hopeful that she handles this phase of treatment well.

I also think it will be a bit nerve racking taking her out in public again because I am now a germaphobic person. Every time someone coughs, sniffles, or sneezes I panic a bit inside because you never know what kind of infection the person may have and certain infections can be deadly to my daughter if not caught soon enough. Hopefully with spring coming up, we will be able to continue to keep her from getting sick and keep her out of the hospital. Fingers crossed.

Jordyn's first day in maintenance didn't exactly start out very well... She had really wanted to bring a little red purse with her jewelry in it to clinic, and we forgot it. She was way more upset about it than she ever usually would be. I think she has just been kind of down overall lately... I have been noticing that she doesn't smile as much and she gets cranky more often. She is feeling some of the impact of all that she has been through I think. This is the third time in treatment that she has been pretty depressed. The first time she quite talking for 2 weeks, the second time was in Delayed intensification when she couldn't stop throwing up and feeling miserable. She seems to be handling her downs better and better, but it is still so sad to see her so unhappy... She was mad at me for the first time since she was at the start of treatment.



This is when we first go to our room in clinic yesterday... She was hiding because she was sad and kind of mad too.



Most of the time she was like this, so I couldn't see any of her face.



It took some convincing to talk her into taking her jacket and shoes off to get her vitals...



She took her jacket off...



And she warmed up a little and started feeling a little better...



And then she actually looked at me.



We finished clinic, and then she had to go to the RTU (Rapid Treatment Unit -I think anyway...) and she was kind of upset again. She is really not too fond of hospital naps.



She was really not happy about her spinal tap she was about to have...



I was able to get at least one smile out of her though!



Here she is under general anesthesia.







Her absolute FAVORITE part of her hospital visits is getting to play on the RTU's Ipad. She really does always wake up sad because it is gone. The child life specialist felt really bad and so she brought it to Jordyn when another kid had finished with it right before we left to go home. Jordyn was sooo happy!



Just waking up from anesthesia...



She wanted barbeque potato chips.











We started some seeds today. The kids loved taking turns pouring the water of the little pellets and watching them grow. I liked it because it helped them learn more how to take turns... ;)

Jordyn has a Facebook page

Jordyn's new Facebook page I figured it may be easier to update smaller things that are going on with Facebook because it is less of a process. I still plan to use the blog as well, but the Facebook page will supplement between the larger posts on the blog. Since she is almost in Maintenance, the blog probably won't be updated as frequently because Jordyn won't have to go in as often to get chemo.

Oh, and for those wondering, she is doing wonderfully at the moment. She is a little tired, but feeling okay.