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

Wednesday, January 23, 2013

January 22, 2012

Jordyn said something to me last night as she was picking her nose that I found kind of funny. First she said, "Sorry I am picking my nose, I am trying to get a goober out of it" and then she said, "But it's okay, that's how God made us, with goobers in our noses."

Jordyn and Jeremy love the dog bed more than our dog does I think. Jordyn thinks it is hilarious to lay in it. She is also wearing one of her favorite dress ups in this picture... We got this costume for Jer, but Jordyn has kind of claimed it even though it is super tight on her. She is Jake from Jake and the Neverland Pirates on Disney Channel. (We don't have that channel, but she saw it in the hospital when she was inpatient once, and now she occasionally watches it on YouTube...)

Here is Jordyn at her clinic appointment yesterday. You can see the hat tree in the background.

This is Jordyn on her Daddy's lap. Her wonderful oncology doctor is looking at her port site to make sure all is well. Jacob hasn't been able to come to many of her appointments, so it was good for her to be able to have him there. Usually if he isn't working, he watches Jer so I can take her. I am very grateful he does that.

Jordyn was so sad in this picture. She asked Jacob the night before if she could bring her "telescope" (stethoscope-I always make sure to use the correct word when I talk to her, but I do find her word for it cute) to clinic and he told her she could. They both forgot to bring it, and so Jordyn was sad when she saw the stethoscope in the office.

Jordyn was sad, and she pointed to the #10 face and told me that was how she felt at the moment...

Jordyn being silly. Since she was diagnosed, she has started putting things she shouldn't in her mouth again. One of those regression areas we are working on, especially because we don't want her to put something in her mouth and get sick from germs on it.

This is in the infusion room while Jordyn is getting her chemo. She got methotrexate and vincristine. The methotrexate takes a bit to kick in with her, but when it does, she is usually pretty miserable for a few days.

Mommy and Jordyn

The nurse preparing to administer Jordyn's chemo.

Jordyn was feeling okay yesterday after the chemo, but it usually takes some time for the yuckiness to kick in. This is after we got home, and before she started feeling sick and everything... These pictures crack me up.

Jeremy loves his big sister sooo much. He wants to be just like her. (Sorry for the diapered kid... I swear I dress him in clothes, but he takes them off A LOT. I think most of the pics I post of him on here are like this...)

Thursday January 10th chemo and LP

I am so late in finishing writing about this and actually publishing it, but life gets kind of crazy here in cancer world sometimes... Anyway...

Jordyn's LP was in outpatient surgery last time, and that means I was unable to carry her back like I usually do until she falls asleep when it is done in the RTU. While we were walking in to the hospital, I explained this to her, and she said to me something to this effect, "It's okay Mommy, if you need me, I will always be in your heart!" She is such a precious little soul. She often says things that show me wisdom beyond her years.

Jordyn is getting D5 which is an iv fluid with sugar in it. Jordyn has a problem with her sugars dropping and that condition actually makes it so she is not supposed to go longer than 8 hours without food. It has been rough making her fast, and hoping she is okay because for the cancer treatments she has to fast. This was the solution the doctors came up with. She gets d5 before her lp's so that she hopefully doesn't drop her sugars too drastically.

She asks for animals frequently. Those, or if we are in the RTU for her lp, she LOVES to play with the IPad they have. She goes to sleep playing games on it and wakes up sad that it is gone.

Here is Jordyn after her LP. She is hurting, but still made the nurses and techs laugh. One of them had a phone that played some music, and Jordyn requested that they kept singing to her, and so they sang for her. Everyone told me how adorable she was and one nurse even went out of her way to tell me.

Jordyn wanted to ride in the wagon up to clinic to get her iv methotrexate chemo. She layed down because her head hurt so bad and her back did too...

It took her a few days to feel okay after the lp... It was so sad seeing her feeling so terribly... She was throwing up from the methotrexate during those days*/, and of course that made her back hurt worse also because she couldn't just lay flat on her back at those particular times...

Monday, January 14, 2013

LP pains

This morning I awoke to Jessica's alarm, but when I went to tell Jessica to turn it off she wasn't there.  After gaining some orientation I went to Jordyn's room.  Jessica look uncomfortable as she slept in her room.  Jordyn had waken up in the middle of the night again crying because of the pain in her back from the LP.  She cried mommy, mommy, mommy.  So I tried to help, but she just wanted her mom.  I was fine with that, because I wanted to go back to bed.  Yesterday we did not give Jordyn any nausea meds, and she only throw up twice in the morning, so I am hoping this is behind us for this dose at least.  The kids love all the cards and toys that have been sent.  I huge Thank You and a Hug for all the support!  Here is Jordyn and Jeremy playing!

Friday, January 11, 2013

Interim Maintenance 2

Jordyn's appointment was longer than usual because for her lp (lumbar puncture/spinal tap) she had to go to the same day surgery operating room because the RTU which is where we usually are didn't have any appointments left on such quick notice. Since her lp, her little back has been hurting her really badly, and she has had a headache as well. Today, she started throwing up from the chemo, and tonight after she slept for awhile, she woke up crying from how much pain she had in her back. She is feeling pretty yucky and miserable right now. I will try to post another update soon that also includes pictures from her appointment, but for now, I am going to bed. The next few days to a week could be crazy if they are anything like the last treatment with this same drug was.

And as always, we are sooo grateful for all of the love, prayers, letters, thoughts, packages, and any other ways we have been helped through this! It makes going through a difficult time so much easier. Jordyn loves getting her letters and the occasional package! It has added a bright spot to her hard days. I wish I had the time and the focus to write everyone a special thank you, but it is pretty crazy around here, so I don't know if I will be able to make that happen, but I do want you all to know that we really appreciate the thought and love you have shared with us. We have been deeply touched by the love and sincerity others, even strangers have shown to us. Thank you from the bottom of my heart!

Thursday, January 10, 2013

ANC 800

Labs from yesterday came back.  Most of Jordyn's blood cell counts are good.  Her ANC needed to be 750 and it was 800.  This is still low (immune system still recovering), but good enough to start IM 2 (Interim Maintenance two).  This mean chemo every 10 days and Jordyn feeling crummy.  Jessica and Jorydn left around 7:30 this morning to start the next round.  Thank You Jessica!  Thank you Jordyn!  Be Brave!

Monday, January 7, 2013

ANC 700

Jordyn's ANC was 700 and it needs to be 750 in order to start chemo, so they will check it again later this week and we will see if she is good to get chemo then. For now, we are just playing the waiting game. Sometimes it seems like cancer is one horribly sucky waiting game...

Sunday, January 6, 2013

Waiting for blood count results

Jordyn has been super tired lately, and her body hurts her a lot of the time, and she feels a bit nauseous as well. Last Sunday, her ANC was 1100 which was good and had me hopeful that we would be on track for once and not delayed in her treatments. However, she had counts drawn again on Thursday, and her ANC was 400, which is considered neutropenic (high risk for infection), and too low for chemo. She is supposed to start the next phase of treatments this week (if she makes counts). Most of her treatments are blood count dependent. Blood was drawn today, and we should know by tomorrow if her counts are at a good place or not and if she can move on to the next round.

Delays are nice sometimes because Jordyn gets to a point where she feels better and is more able to be her fun loving and happy self, however at the same time, delays scare me a bit. I worry when she is not getting the chemo that keeps her cancer away.

I am not super hopeful that her counts will be good for this weeks chemo because her temperature keeps fluctuating between normal and 99.4 which for her generally means she is neutropenic, but we shall she tomorrow what they are and if she is still low.

Tuesday, January 1, 2013

Christmas and a New Year

The day Jordyn came home from the hospital she was sooo happy to be home, but she was also super tired. Some of my family was up and Jordyn didn't even want to wake up to open some presents from them since she was sooo tired...

I cannot believe I was actually able to get a picture of both of my kids holding still long enough to not have a blur or a silly face.

Here is Jacob and the kids right before presents.

And here is me and the kids right before presents.

Jordyn has been extra sleepy and tired since we have been home. She gets sad a lot because she says her whole body hurts. She hasn't been walking much or doing much other than sitting on the couch because her legs hurt too much. I think the pain is gradually lessening, as I am seeing her gradually doing more playing and walking in the last week or so, and I don't have to carry her to the bathroom when she has to go anymore.

She has been a lot happier the last couple of days. She gets super excited to open and have us read her the letters and cards she has received.

Her last port access was miserable for everyone involved. Normally she does really well, but she had a bad experience when she was in patient and was accessed (poked with a big needle) without any numbing cream WHILE she was sleeping (I was sleeping too, until she started screaming...) When I tried to de-access her(she needed the needle changed) she freaked out. When the nurse got here, Jordyn was sooo scared, and it took a bit longer than usual.

She has been super scared a lot more lately, but she has also shown how much she loves those around her more as well. She usually knows when someone needs a hug, and gives them freely, and then makes sure to ask if that helps you to be happy.

Oh, and a new development has arrived... Peach fuzz! Jordyn is so happy that she is growing her hair back, and says she wants to grow it really long, just like her friend, who has long hair because "she doesn't have chemo".