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.

Monday, November 26, 2012

The second half of delayed intensification, delayed again...

Jordyn was supposed to go in on the 19th for chemo and an lp, but her counts were really low, so we had to cancel. Her anc was 100, and it needs to be at 750 to continue the treatments. We were kind of happy that we got to have a nice Thanksgiving without a really sick and miserable girl though. Clinic rescheduled her appointment for today, but again her counts are too low. She is at 500 now, so maybe next week she will get her chemo. It is nice sometimes to get a break, but at the same time, I worry more when she isn't getting the only medicine that is keeping the cancer at bay. I figured even though this is short, it would be good to update everyone. Even on our break things have been kind of rough for all of us. Jordyn is still having steroid withdrawls, which make her very emotional and grouchy sometimes. We are so grateful for everyones support and prayers.

Also, for those interested, a friend of mine from our ward has set up a fundraiser for this weekend. It is on December 1st, and there will be lots of crafty items, blankets, holiday decor, and lots of other fun stuff!

Here is the information:
Holiday Boutique for Jordyn Smith Sat, Dec 1, 2012. 9:00am-12:00pm. 1332 Creekhaven Dr. Riverton, UT 84065
100% of the money will go to Jordyn Smith's medical fund .
I still need items like, Home Decor, new or really good condition clothing for children or adults, bath and body items, toys preferably new but will take really good conditioned used toys, Christmas decorations, floral arrangements, etc.
PLEASE DROP OFF ANYTHING YOU WOULD LIKE TO DONATE TODAY IF POSSIBLE. I WILL BE HOME FROM 11:45am-2:15pm and 3:30pm to 7:00pm. If you can't drop it off today just bring it when you are able to. Thanks so much!
You can call-801-446-6441 You can You can facebook me, Katrina Endrizzi
Share with family and friends, donate and come shop for Christmas!

And just for fun, here are some pictures.

Jordyn absolutely loves her dress ups, I am not sure she would make it through this without them.

And she adores ponies as well. She even took one to dance class with her, and lets them sleep in her bed. So I decided to put up pictures of her and two of her favorite things that help her cope with the cancer stuff she goes through.

Her little brother also has a favorite thing to do... He loves to color on things he is not supposed to... This time it was crayon on the dishwasher, usually it is marker on the couch... Or chalk on the walls... Or marker on himself... (I have no clue how he manages to get his hands on so many coloring objects, ugghhh... We love him anyway though.

Sunday, November 18, 2012

Just for Jordyn Fundraiser Kickoff Review

Jordyn's fundraiser kick off went very well. We were amazed at all the support there was for us and our sweet little girl. There were games for the kids to play and booths to look at. I even decided to let Jordyn go... Under the condition that she wore her surgical mask and carried around hand sanitizer and used it frequently to prevent herself from getting sick. I actually felt at peace with this decision, which is odd, because usually I am worried sick anytime I take her anywhere because her immune system is so suppressed that I worry and feel super guilty afterwards. Anyway... She had an amazing time and really didn't want to go home, even when she was practically falling asleep. Eventually she realized she was completely exhausted and came up to me and said, "Can I go home now mommy?" I wish I had gotten more pictures while I was there...

We are so grateful for everyone rallying to help our family out. This has been a difficult journey for our entire family and it is wonderful to know that people are there for us. We are thankful for every thought, donation, and especially prayers for us. I also want to thank Jordyn's wonderful dance teacher, Judy Thompson of Back to Basics School of Dance for all of the time and effort and love she has put into helping out (both with fundraising and the special effort she makes to help Jordyn continue doing what she loves). Jordyn is so very blessed to have such wonderful people in her life.

We came home from the fundraiser and we were all pretty tired, but Jordyn had thankfully gotten a nap. Jordyn's aunt Ashlee had said she would shave her head when Jordyn's hair fell out, and so Jordyn made sure she did it while she was up here. Ashlee even let Jordyn do the shaving as much as she wanted. I should also mention that Jordyn's uncle Jon shaved his head in support of our little one as well, I just don't have the pic on my computer.

Jordyn loves her aunt Ashlee!

My kids enjoyed rubbing Ashlee's almost bald head.

I will try to update when I know how much was raised. I am not sure the amount yet, but I feel like it was super successful, and we are truly grateful. I am also going to remind everyone that she has another fundraiser coming up on December 1st from 9 am to noon at the Endrizzi Home: 1332 Creekhaven Dr. Riverton, UT 84065 Help Jordyn fight Luekemia. Donate items or come and shop. We will have all kinds of holiday decor, gifts, and baked goods . Please come and support this good cause and start your shopping off right for Christmas. I will post more reminders on this after Thanksgiving as well.

We will find out soon if Jordyn is on schedule for her next chemo treatment. If she is, she will also be getting treatments at home in this next stage. It is supposed to be one of the most difficult stages of treatment for Jordyn's type of cancer. When she starts, we will need love and prayers more than ever. Thank you everyone for your support, we greatly appreciate it!

Sunday, November 11, 2012

Just for Jordyn Fundraiser Kick Off

Just for Jordyn Fundraiser Kick Off·By Back to Basics School of Dance
The location for all Saturday Nov 17th events will be held from 10:00 - 8:00 at the Midvale Boys & Girls Club 7631 So Chapel St (420 W) right behind Midvale Elementary. Remember to call if you want pictures. Saturday, November 17, 2012 Jordyn Smith is a 3 year old student at our studio. She has been diagnosed with Leukemia. We are hosting this fundraiser to help off set the costs of Jordyn's treatment. There are several events going on: *Craft & Bake Sale at the studio ~ Now through Nov 17th during studio hours Tues 4:30-6:30 Wed 10:00-1:00 & 5:00-9:00 Thurs 4:00-7:30 *Family Portraits ~ Nov 17th. Great time to update your family portrait! Professional protrait, 10x13 canvas textured and framed. JUST $12.95 entire amount goes to the fundraiser!! Call 801.835.8074 for appts *Boutique & Family Fun Day ~ Nov 17th 10:00 - 8:00 A wide variety of craft and product booths, plus lots of family fun with games, entertainment, face painting, cake walk, etc *Raffle ~ Nov 17th. $1 per ticket. Lots of great things will be given away. GRAND PRIZE ~ 2 ROUND TRIP TICKETS ON JETBLUE AIRWAYS!!! Contact any Back to Basic Student or Judy Thompson 801.835.8074 for details on any of the events. Ways you can help: *Donate to the craft and bake sale or stop by the studio and purchase something *Have your family portrait taken *get 5 free raffle tickets when you have your portrait done *Be a vendor at the boutique! Come to Boutique and the Family Fun Day! *Be sure to get into this raffle!!! Great Giveaways and everyone in the raffle will have a chance at the GRAND PRIZE!!! *Donations are gratefully accepted by any Back to Basics student or at any Wells Fargo Bank ~ Jordyn Smith Leukemia fund of Utah On behalf of Jordyn and her family ~ Thank you so much for your help, support, love and prayers

And I will leave you with a recent picture of Jordyn taken on Tuesday. She decided it was time to shave her head since most of her hair fell out on Monday, and there was just a little left.

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...