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

Monday, December 24, 2012

Home Again

They discharged Jordyn from the hospital yesterday. She is feeling a lot better physically. She is still super tired, but not as nauseous as she had been. She was very happy to come home. She is getting iv hydration at home as well as iv antibiotics, and two anti nausea medicines. We will probably have to go in in the next week or so for a blood transfusion because her counts are dropping.

Saturday, December 22, 2012

Hospital Update

As Jordyn sleeps in her hospital bed my thoughts turn to appreciation to Jessica.  Thursday after her last dose of cytarabine Jessica knew Jordyn was not doing well. I wanted to relax and sleep and stay at home but Jessica wanted to take care of our girl.  So we called the oncologists and they were ok not sending us to the ER.  But around 7:30 pm Jessica took Jordyn to the ER knowing that she wouldn't get to bed till 2 am maybe.  And I am so glad she did.  Jordyns blood sugar was down to 57 but it is up to 81 this morning.  Her hematacrit is at 25. Much lower and she may need a blood transfusion.  Her ANC is down to 200 meaning she has very fewer neutrophils to fight infection.  My ANC may be around 4000 to give you an idea of how low that is.    Her platelets are also low at 103.  Here they are giving her IV Zofran q 6 he and IV Ativan q 6 hr and she is still throwing up. She is also getting IV fluids.  All of which she really needed.  Thanks for bringing her in Jessica.  Thanks to everyone for your prayers and support!

Friday, December 21, 2012

admitted to the hospital again...

Jordyn has been pretty sick since we'd the 12th. she hasn't kept much of anything down since then. I took her to the er last night and they decided to admit her for dehydration and low blood sugar and a fever. she has been so sick tthat she was throwing up blood last night. they want to make sure that she is okay and I think able to eat and not have fevers. We were in the er on Tuesday as well to get her hydrated and she had home fluids on Monday and Tuesday. I hope her body and her soul start feeling better soon. it has been pretty hard on her. she has been so sad and scared lately.
I just listened to the Drs plan for her. her counts have dropped. she is now neutropenic at 300 anc. her hematacrit is 25 down from 28 last night. this means she Will most likely need a blood transfusion fairly soon. her platelets are about 104. they will begin antibiotics today. they plan to monitor her sugar. she is currently at 65 blood glucose level.

Tuesday, December 18, 2012

Hard Times

Jordyn was so sick and miserable last week, but yesterday she seemed so much better as the day progressed and was just super tired, her tummy hurt but she was not throwing up but she still wasn't eating much, so I was very hopeful that she would handle the chemo this week really well. Today, I know that she is going to struggle this week. She is sooo tired, doesn't want to really move, her legs are hurting more and more, and she isn't keeping her food or drinks down... This is less than an hour after she got iv zofran... She is sad and feeling super yucky and spending all of her time on the couch only getting up to go to the bathroom. Since our hospital stay last week, she gets scared to go to sleep unless I stay there until she falls asleep. She is missing her friends and really misses leaving the house. She is actually asking for medicine (zofran to help her tummy...), which she has never done in the whole course of treatment until now. For her to admit she hurts or feels yucky means that she feels really yucky and hurts really badly. I think the hardest thing is just knowing it is going to get worse before it gets better...

I just tucked her in for a nap, and she said to me, "Mommy, I am sad..." Then a few minutes later I heard her gagging, and after she finished she said to me, "I am sorry I am so sick..." I told her it was okay and it wasn't her fault and we would take care of her. Anyway... What I am getting at is that I know something that you can do for her... She needs to know people are there for her and cheering her on even if she can't see them because she is stuck at home feeling sick and miserable. Here is what I am asking

Please mail her a letter, post card, whatever is easiest with her name on it with this information.

Your name

How you heard about her whether you are family, a Friend of a Friend, etc.

Where you live

And most importantly a message to Jordyn. It can be anything! Short, long, whatever you can find time to write. If you need our mailing address, email me at

I think that getting supportive mail through these next few hard weeks will be an uplifting and wonderful experience for her and something she can always look back on and remember all the people who care and want to support her.

We love all of you and are so grateful for your support and especially your prayers.

If you need our mailing address, email me at

Monday, December 17, 2012

At home chemo... Ara-C is no fun...

The last little while has been kind of crazy, and I haven't managed to find the time to blog about our journey, but I did get lots of cuddling time with my children, which was nice.

Last Monday we started the second half of delayed intensification. This is supposed to be one of the more difficult and stressful chemo's for the kiddos to go through. So far, that has definitely been the case...

This is us waiting in the RTU for Jordyn's lumbar puncture to make sure there are no cancer cells in her spine and to administer chemo.

Mommy and Jordyn She loves to play with the child life specialists Ipad. They even let her play right up to and including when they give her the general anesthetic. She falls asleep playing, and then gets sad when she wakes up because that is the last thing she remembers.

She just got put under general anesthetic. The nice thing about the RTU as opposed to the operating room is that I get to carry her in and be with her until she falls asleep.

This is in the E.R. Monday night. She had a fever of 103.1

They admitted her because her counts were different than they thought they should be and because they worried about fevers getting too high.

Jeremy and Daddy came to visit while she was inpatient.

They let us go home the next day around 6 pm and just let us know if we saw more symptoms or if we got concerned about her to call.

We got home and Jacob took of her electrode thingies and I stuck them on Jeremy just to see what he would do. He was sooo proud to be wearing them. They fell of and he would stick the right back on. He really looks up to his big sister.

This past week has been a pretty rough one, but there have been a few amazing moments thrown in there. This is Jordyn and Jeremy, and they are actually playing together. Jordyn and Jer even giggled a little. They haven't played like that since before she was diagnosed. It is something that completely warmed my heart and made the rest of the week more bearable.

One of Jordyn's Angel Karen's sent this in the mail, and she LOVES it so much. She tries to wear it all the time, day and night, and gets sad when I make her take it off so it can be washed.

She is getting to the point where sometimes she gets so cold, so she wears hats, sometimes even when she is inside just to stay warm. She loves this one from Angel Karen.

Here she is showing her brother some love. Her brother often dresses up with her, so don't mind the dress... He loves dressing up with his big sister, and she loves to dress him up.

She has started feeling worse and worse over the week, and it got even worse over the weekend. She has nausea almost constantly, and she is having a hard time keeping anything down. She got Ara-C and another chemo at clinic on Monday, and then they gave it to her inpatient on Tuesday, and on Wednesday home health came out to show us how to administer it ourselves. I administered the chemo on Thursday, and found it was more emotionally difficult to give it to her myself than having someone else do it. She kept asking why I was wearing a protective gown, and gloves, and I didn't know exactly what I said, but I had a hard time coming up with something that I felt was okay to say to her.

She is super tired today, but hasn't had as much nausea, but I am not super hopeful that it will stay that way because we have to do iv chemo Monday to Thursday again this week. Oh, and she has also been on a chemo pill since last Monday and will continue to get that every day this week as well.

This is a picture of her port while it is accessed and while Jacob is administering chemo. He got to work later in the day, so he was able to do it. Jordyn gets so sad when it is time to give her chemo... She knows it makes her feel really yucky, and so she cries when we are about to give it and begs to not have to do it. It is really heartbreaking...

This is how she looks most of the time... You can see on her face how miserable she is. She has to carry a bucket around with her wherever she goes because we never know when she will need it. She has barely eaten anything in the last week, and it is hard to get her to drink as well. She knows that when she eats, she usually can't keep it down... She is super dehydrated today, so much so that the clinic ordered some iv fluids. And her legs ache... She cries a lot lately and is pretty sad a lot of the time. I have a feeling this week will be a long one as well...

And I almost forgot... We should know what her blood counts are later on today. Her home health nurse drew a cbc this morning. That will let us know if she needs any blood products, because this phase is pretty rough on their cells... She is completely exhausted today.

Tuesday, December 11, 2012

Happy to be home

Jordyn and I just got home from her inpatient stay at the hospital. It was a nice, short visit, and we are so glad to be home! Now we have two days of at home chemo, but Jordyn seems to be tolerating the Ara-C fairly well (with the exception of her fever and hospital stay...) There is just something about being home that makes my heart happy.

December 10th

Jordyn got two new chemos yesterday and a lumbar puncture . she came home and napped and when I checked on her she had a 103.1 fever so we had to go to the er at around 6:30. she was admitted around 1am. we r just waiting at the hospital till she gets her chemo and if all goes as planned we will be able to go home tonight. it is possible she may spike a fever again from her chemo but hopefully not...

Thursday, December 6, 2012

Fundraiser and Update on Chemo

My friend Katrina from my ward did a fundraiser for us on Dec. 1st, and it was incredible! It was more beautiful than I could have ever imagined! I got some pictures, but they definitely don't do it justice. I was planning on taking a picture of Katrina to put on the blog, but I have been so very spacey lately and I completely forgot to take it. Thanks to the fundraisers we had this year for Jordyn, we will have a head start for next year! I am amazed and so very grateful for how our communities have come together to support us through this difficult time in our lives. We are so blessed and I am happy that we have been able to see so much good this holiday season. This year for our family is definitely one that is focused on Christ and the true meaning of Christmas. I was so touched by all of the people who reached out to my little family in so many ways. I am not sure it is even possible for us to show how grateful we are to everyone who has supported us. People have reached out in ways I never even realized were possible. I have learned that service really is the gift that keeps on giving.

These next pictures are from the day after Thanksgiving, I think... Jordyn loved putting the star on the tree and plugging in the lights.

Here she is with the reindeer decor that my husband really loves because it reminds him of his grandparents. She loves to "ride" it around the house. Kinda silly, but it is something to keep her entertained.

Here she is dressing up again. She absolutely adores her dress ups, and I am thankful she has something to keep a smile on her face.

And of course we can't forget her little brother! He enjoyed playing with the Christmas tree balls. I tried to find a picture of him where he wasn't just in a diaper, but my silly boy seems to enjoy running around like that...

Oh, and I almost forgot to update on her chemo status... Jordyn's anc dropped from 500 to 200 this week, and she needs to be at 750 to start the second half of Delayed intensification... I have no idea when she will have her counts up, but she will get a blood draw on Sunday and we should know where she is at on Monday. I don't have much hope that she will be ready to get chemo next week, but she has surprised me with her counts before. She has now been almost 6 weeks without chemo, which makes me a little nervous, because as a mom of a kid with cancer, I always worry that it will overtake her little body again while she is resting and trying to get her counts back up.