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


Wednesday, November 7, 2012

October to November 7th

I feel like everything has been super crazy around here lately, and I have had a hard time getting to writing blog entries, and especially adding pictures to them... Sorry I have been slacking on that part, I have just felt so overwhelmed with everything going on in our lives at the moment. Anyway...

If you are one of my friends on facebook, you have probably already seen these, but I will share for the rest of you...

Jordyn's little brother had colored all over himself with a marker, and I decided I needed to record the moment on the camera (we had a similar picture of Jordyn at about this age covered in pen). Well, I was just about done taking the pictures of him when Jordyn says she wants pictures of her too. I turn to find her also covered in marker...





The absolute worst thing about this incident was that she had pictures scheduled for the next morning for the canSURVIVE event thrown by needs beyond medicine, and come to find out the marker was NOT washable... Uggghhhh... I got her as clean as I could... And in case you were wondering her pictures turned out fabulously, and you may have even seen them on the news! It all ended up fine, but I was one stressed out mommy for about an hour until I was able to get her cleaned up. (guess they could have used photoshop if they had too...)



We were also able to get out of the house for a hope kids event. Hope kids is a wonderful organization that helps set up events for immunosuppressed kiddos and there healthy not sick families to go to with less risks of them catching an illness. It was a much needed outing for all of us.



Jacob (Jordyn's daddy) had a birthday on October 17th. We went to Jordyn's dance class as usual. (It is a private dance class and she has an amazingly understanding teacher whom we absolutely love) Anyway... After dance, we decided to go to a local pumpkin patch to celebrate Jacob's birthday and to get Jordyn out of the house for awhile longer. It was nice because we were pretty much the only people there, so we didn't have to be worried at all about crowds and germs. It was also nice because our garden pumkins we tried to grow didn't really turn out this year.





This is Jordyn showing off our new pumpkins and the small amount of pumpkins that did work from our garden. Her hair is crazy because she just took out her dance piggy tails and it just likes to stick up.



So Jordyn has gotten two more of her doxorubicin doses. Thankfully she seems to handle it without too much nausea. Her counts have definitely dropped, and she is currently neutropenic (she doesn't have much of an immune system at the moment to fight of illness). Her anc on Monday was 500, and it is sure to have dropped more since then from her chemo dose she got that day. Here are pictures from her chemo about a week ago.



She completely adored the tiny princess dolls because she could change there clothes and they came with a carriage and a horse. She actually was sad when we left that day because she had to leave them behind. I think it was even more fun since she was wearing her princess dress up.



She really wanted a picture by the purple flowers.



These next pictures are from Jordyn's last chemo. She will start the second part of Delayed Intensification in about two more weeks. Some of that chemo will be done at home, and she will most likely be getting chemo on Thanksgiving too since it is one that is given over a few days...



getting vitals



Waiting in the room... Here are some picture in case anyone wondered what it looked like... Plus, they forgot to write our name on the board, so we were waiting for a REALLY long time, and we had to break the monotony somehow...







This is Jordyn and her crown she made while we waited.



This is back in the infusing area/room. You can see the craft table in front of her iv pump, to the left is the nurses area/snack room, and to the right down the hall is the waiting room/check in area



This is doxorubicin, also know as the "red devil" or "red death" chemo. It has dropped her immune system down, but her other counts are hanging in there.



Typical miss Jordyn at chemo. She loves to go and get snacks, even if she doesn't feel well enough to eat them. I think she looks so tiny pushing/pulling around her iv cart... (she is usually very independent)



She does really well with not feeling to sick with the doxo, but the steroids have done a number on her... She is sooo very emotional... I often feel like I need mommy breaks because she has so many meltdowns while she is on steroids, and for about a week or two after she comes off of steroids. We had about 8 breakdowns yesterday JUST relating to chicken nuggets, not including all the others she had... Here are some pictures from chemo day this week... This is only a small sampling of what she and our family deal with day in and day out... My patience is definitely being tried and I am working really hard to stay as patient as I can because I know this isn't how my daughter really is when she isn't hopped up on steroids and beaten down with chemotherapy...



Long day of roid rage and extra clingy ness (not the cuddly kind, but the crawl all over and bounce and squish mommy to death kind) and super frustrated kiddos made it one of those nights I wish I could have had a girls night out or something... It is interesting how things that might make you laugh one day, totally make you want to cry on another day...



This was totally one of those things... (Ever try to clean partially dried ketchup off of almost every inch of a wiggly kid?... I have!)



This last two weeks have been especially hard. I can manage as long as I worry about one day at a time. Jordyn is an amazingly strong and tough kiddo... We can do hard things...

Jordyn has felt completely miserable all day. She seemed okay this morning and is just feeling and looking worse and worse as the day goes on... I took her to dance and she didn't feel up to doing anything so we went home... That is super unusual, since that is usually the highlight of her entire week. Tonight she is pale, and looks yellow and her eyes are all swollen, puffy and red underneath. She has spent almost the entire day sleeping, and when she is awake, she just lays in my arms whimpering... I am very worried about her, but I called clinic, and they had a nurse come out and do a cbc and a cmp(I think it is complete metabolic profile?). They were all fine, with exception of her anc, which I already knew was low. I also have my mommy sense telling me something is wrong, but maybe I am just overly stressed (maybe Jordyn is overly stressed?)... She is also going back to not talking and not reacting to people, including me and her daddy... This concerns me... I worry it might turn out like it did last time she did the silent treatment for a couple weeks...

This last picture is of her today, sitting on the couch and feeling miserable...



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