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


Thursday, April 11, 2013

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!