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

Monday, September 24, 2012

Jordyn's Movie

Here is a video I made for Jordyn to hopefully help in our fundraising efforts. If you are interested in helping us in our fundraising efforts, there are many ways to do that! We are trying out a few different things to see what we can do that will work. For starters, there is a donate button on the right side of the blog and you can give to her paypal account. We also have a temporary fundraiser up at youcaring

One way to help is to like our youcaring fundraising site on facebook so word can spread that a little girl and her family are in need of help.

Also, since the online fundraisers we have set up don't seem to be picking up the momentum we need them too, we are setting up local fundraisers/bakesale/boutique/rummage sale/pictures for those who would be interested in donating items for that we would appreciate any help we can get, as well as willingness to attend and spread the word on those to all of your friends! Again, we greatly appreciate all the help and donations we have received thus far, and are thankful that people are willing to continue the efforts. Bills are starting to get really stressful and insurance benefits start new next year and I am really not sure how we can manage this on our own, because the cost is so high. I will let people know as soon as I have dates for the local fundraisers more set.

Thursday, September 20, 2012

Jordyn was sent home from the hospital on Friday the 14th. They let her come home because her fevers FINALLY stopped, and her blood cultures came back negative. Her ANC was still at 100, so they are having us give her iv antibiotics every 8 hours because she is still at great risk to catch a bacterial infection than her body can't fight off right now.

These two pictures are of Jordyn when her fever spiked super high, and she got all flushed and was very sad and wanted to go home really badly. They kept going up and took forever to go down even with tylenol. They don't give leukemia kids Ibuprofen because they tend to have low counts and if they bled it could be dangerous if they took Ibuprofen.

Cuddling daddy trying to feel better.

It is so nice to be home. Jordyn seems to be extra tired lately. She has taken a nap every day for the last few days, and she usually doesn't nap. She is whining a lot and just doesn't feel quite like herself. She is enjoying being home though, that is for sure, and she has lots of moments where she is her normal happy self.

She has just loved dressing up lately, so I went and got her an early halloween costume. There is a good chance she won't be able to trick or treat or leave the house even come October, so I figure she can at least get the enjoyment out of her costume. Her eyes lit up so much when I showed it to her, and she wears it all the time.

Right before I took this picture she was in tears and having a mini meltdown because her brother was being a little stinker, but when she saw I had the camera, she pasted this smile on her face.

And this is right after that picture... Little brother has been having a hard time lately, and is acting out a little bit. They still love each other a bunch, but they get on each others nerves a lot more lately...

Hopefully I will find out what Jordyn's counts are today. I have found that leukemia treatments are completely unpredictable, and everything is always changing in a moments notice. I am always nervous when I tell someone I will do something because it seems like our plans always fall apart because of unpredictability. I find myself getting pretty anxious waiting on tests and procedures. It has been almost an entire month since Jordyn was able to get her scheduled treatments because of low counts, and this is supposed to be one of the easier rounds of treatment. If Jordyn can ever make it through Interim Maintenance, she has delayed intensification in front of her, which from what I have read on other peoples blogs and just reading through the drug side effects that she will be on it really does sound pretty intense...

Anyway... I am not even sure yet if her next scheduled treatment will happen or have to be rescheduled yet again since she has had such low counts, so hopefully they come up and she can get the chemo over with. I think the further out we get, the more nervous and anxious I get.

Wednesday, September 12, 2012


Well... jordyn had a fever last night after she woke upfrom her nap. We had to take her to th er because it could indicate a bacterial infection which could be dangerous sinceher immune system is compromised. Her counts came back low at 300 for ANC so theygave her antibiotics and adlmitted her. They want to keep heratleasrt until her fevers stop and her blood cultures come back andpossibly till her anc comes up. We will stay at least until tommorow

Monday, September 10, 2012

How chemo day went...

Jordyn's ANC was still at just 400 when we went to clinic today, so they just gave her vincristine and not the methotrexate. They are going to try again in about a week. We will see what her counts are, and if they are still low, then we will stay home again from her next scheduled chemo appointment. If they are high enough, she will get the Vincristine, 80% of the methotrexate she received last time, and another lumbar puncture.

This is Jordyn and her child life specialist she loves so much. She has helped Jordyn so much when Jordyn is having huge emotional issues. They play games and makes coming to clinic a little more fun and a little less scary.

Every time we are there, before we leave, Jordyn loves to look at the fishes. She could probably sit there all day if I let her, but we usually are in a hurry to get home to see her little brother.

Oh, and the mask she is wearing, she absolutely HATES it... But... She prefers it to the surgical mask that squishes her eyes (but offers more protection from the air).

The chemo treatments when she gets methotrexate iv are pretty rough. She gets so sick, and she gets really cranky. Here are some pictures I took while she was having a rough day. They get better the further out from chemo she is, but I must say her whiney-ness is hard to handle and so is seeing her so different from the sweet girl she is. This has been pretty tough on her and us, and I am sure it will continue to be a great trial in our lives, but I am glad she is past the silent treatments and the screaming.

Chemo day today...

We will see later today what Jordyn's counts are, and if they are high enough she will get her scheduled treatment, and if not, they will just give her Vincristine and not the Methotrexate. I almost can't believe how anxious I am... I will try to post a picture later today.

Wednesday, September 5, 2012

No Chemo tomorrow...

Jordyn's ANC today when home health came out and drew her blood to send off was 400 which puts her in the high risk for infection category(you can read a little more about ANC if you wish below this and the pictures. This also means since she is at greater risk for infections that they have to hold off on her chemo she was supposed to get tomorrow until her counts come up again. I am not sure if I should be disappointed or happy. It means the overall length in time she will be getting treatments will be extended, but I am sure that will happen over and over again over the course of treatment, but there is definately a good thing that comes of this. She is finally starting to be more herself and less whiney from her last chemo treatment, so I get to enjoy my sweet lovey girl for a few more days, which will be nice.

Here is a picture of her port while it is accessed. I need to get a better one and maybe one of it while it is getting accessed and one while it isn't accessed, but this will do for now.

This picture is here to illustrate how much hair she has left. She has definately lost a lot, and will likely loose the rest soon, but she still has some at the moment.

This last picture shows how Jordyn has been for the last few days around the house. She is wearing her triceratops costume and carrying her two triceratops toys around, and in the picture, she is watching Land Before Time.

Definition: ANC will often appear on the blood test report of a person receiving chemotherapy. It refers to the percentage of neutrophils (white blood cells that fight infection) and cells that will become neutrophils multiplied by the white blood count (WBC). The significance of the ANC is as follows:

ANC below 2000 is considered to be neutropenia

ANC between 1000-1500 fairly low risk of infection. Chemotherapy will usually be given in this range, but not below it.

ANC between 500-1000 - moderate risk of infection

ANC below 500 - severe neutropenia - high risk of infection