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.

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...

Some of the girls in our ward brought Jordyn a special bag of candy and a card since she couldn't go trick or treating. So sweet!!! I am so blessed that I get to see people serving others, and serving my family. If only it were under different circumstances, but we appreciate everything, even the little things people are doing and have done for us sooo very much! Thank you for all of the thoughts and prayers, and thank you to those who have brought us food, and special treats to brighten our days! I have a feeling I will get to see more of the good parts of the holidays than the bad this year! Last year I didn't appreciate the holidays as much as I probably should have because I let the crowds and rudeness some people express when they are doing holiday shopping get to me. I can already tell it will be quite a different experience this year, and it will be okay, maybe even better with us being stuck at home (and of course the occasional trip to the hospital for Jordyn to get chemo...).

Anyway... It has been awhile since I last posted... Things have actually been going alright lately. The first part of Delayed Intensification hasn't been too awful. She has handled it better than she did her last phase of treatment. She has had better counts, and less nausea... But, the doctor told us the worst part is the second part of delayed intensification. Next week will be her last week getting chemo for the first part of it, but the second part starts right around Thanksgiving, as long as her counts are good enough. During this next part of delayed intensification, she will be getting two new chemo's, and one of those will be administrated at home a few days in a row. New chemo's always make me nervous, because it is unknown how her body will react, and how she is going to handle it emotionally. From what I have heard from other cancer moms, and read on other cancer blogs, Delayed intensification gets to be pretty miserable, so we shall see... I have decided that with cancer, there are so many variables, and unknowns that make us cancer families and our little ones play the waiting game. We have had a hard time not being able to get out much, and when we occasionally do decide to take Jordyn somewhere, we have to deal with the extreme anxiety and guilt that she may get sick. We are part of that "special" group of people who they immediately put in a triage room when we go to the er (which happens every time our cancer cuties have a fever) just to protect them since there is always a good chance that a fever means their immune systems are completely shot and they could get sick very easily and have a hard time fighting off infections. We are also in the special group who gets to cancel doctors appointments with less than 24 hours notice if counts are to low to get chemo. Our doctors are very lenient in what we feed our cancer cuties. The most important thing right now is calories. Since food tastes differently, favorite foods aren't always the favorites anymore, and appetites go from not hungry at all to can't stop eating everything in site because of rounds of steroids...

And I got off on a really long tangent there for a minute... Sorry about that... Anyway... Jordyn has had a bunch of energy and with the 7 days of steroids she was on, she has put the weight she lost during interim maintenance back on, so that is very good.

Some Halloween Fun

He is a picture of some of Jordyn's toys mixed with some gifts from people over the last few months mixed with some Halloween items.  Happy Halloween!

Find:

3 Pumpkins made of fabric
1 Pumpkin with bumps
1 Ariel
2 Frogs
1 Purple cat
1 Skull
4 Penguins
1 Rainbow Dash
1 Eyeball in a plastic ball
1 Pig
2 Purple flowers with a yellow center
3 Spiders
4 Paper butterflies
2 Pillow Pet butterflies
1 Rainbow teddy bear
2 Hats
1 Metal with a green ribbon

The dreaded delayed intensification has arrived...

First, I apologize for the poor picture quality... I only had my cell phone camera today, but I figured poor pictures are better than no pictures...

Jordyn had a clinic appointment today. She was also due for a lumbar puncture (or back poke as the people there tend to call it). This means she wasn't allowed to eat anything after midnight last night, and clear liquids up to 3 hours before her lp (which just happened to be at 2:30... Ughhh...) I always worry about her sugar since she also has ketotic hypoglycemia and really isn't supposed to go more than 8 hours without food of some kind... Thankfully she did okay with it today. Anyway... I am getting distracted.

So, we got to clinic at 12:30 for her appointment (she also had an ECG scheduled at 1:00). It was a busy day at clinic I guess, and there was not a room for Jordyn, so they had us wait more in the waiting room. By about 12:53 or so, we made it back to a room. They talked to us and had us fill out Jordyn's LP forms, accessed her port, tried to draw blood, and then sent us on our way to cardiology. (Jordyn had to get an ECG and an EKG to check her heart function before she started her new chemo today. The new chemo (doxo-something?) also known as the red devil by some cancer moms has been known to cause damage to the heart and so they monitor heart function while the kids are on that chemo. We made it about 20 minutes late to her ECG appointment, and Jordyn was really scared because it was new and different and she didn't know what to expect. She held my hand for the first 20 minutes or so until she realized that it wasn't going to hurt. Then the ECG tech finished and had the EKG tech come in and do that test. Jordyn was able to choose a prize for being so brave. She chose a silver sparkly hotwheels car.

Then we hurried over to the RTU (Rapid Treatment Unit- they do procedures that don't need a sterile environment, and are much more welcoming, and less scary than the operating rooms.) We registered and headed back. It is so much nicer when she is able to get into the RTU instead of the OR... I am able to carry her back and set her down on the procedure table until she falls asleep. Sometimes they even let me hold her in my arms until she is out. When it was our turn, I carried her back, and they had me set her down. They pushed the white anesthesia through her iv line and she was out within 5 seconds or so. I am almost always surprised at how quickly she falls asleep. Then I went out into the hallway to wait. Within about 5 minutes or so, Virginia (the person who performed Jordyn's LP and performs most of her other lp's as well) came out and said it went great. Jordyn slept in the recovery room for awhile and about 45 minutes later, they came and told me she was waking up and I could come see her. She usually tries to sit right up as soon as she wakes up, and doesn't realize how unstable she is, so she wobbles and tips and has to have a person right next to her to make sure she doesn't fall right over, even though she says she can do it and doesn't need the help, she really does... After she wasn't so tipsy, we were able to take her upstairs to clinic again, in a wheelchair with a seat belt (didn't want her to fall out...)

We were the last clinic patients there, so we just had our doctor consult in the infusion area. Jordyn kept trying to get up to walk around and she was not stable at all... She got her doxo(rubicin?) which is a red liquid chemo as well as her vincristine. This is a new chemo and I am nervous to see how she reacts to it. She has been getting more and more unstable and having a harder time walking, most likely as a result of the vincristine. She is very shaky even 2 or more weeks after getting it, and I am starting to worry about how often she falls and trips as a result of the chemo's she is getting. Her doctor is going to try to get her in to see the physical therapist next time we go in. She has to go in again later this week to get Pegaspariginase, which is a chemo that runs over an hour or so and she has to be monitored for about an hour as well to make sure she doesn't have a bad reaction to it, and if she does, she will be around people who can help. Jordyn is also starting steroid pulses tonight. She will get steroids for 7 daya, then off for 7 days, then on for 7 more days. The steroids will likely cause roid rage, as well as intense hunger, that she will hopefully be able to quench, because the chemo's make her not want to eat, and that is a hard place for a person to be in, especially a kid...

Upcoming Fundraisers

Here is one of the flyers for the first fundraiser in November. I will try to add more about it soon.

Last chemo for Interim Maintenance 1

I don't know how I got so out of the loop in just a few weeks, but apparently I am distracted or something... Anyway... I guess Jordyn had her last IM1(Interim Maintenance 1) treatment today. This means in about two weeks she will start DI (Delayed Intensification) which is supposed to be pretty miserable... Espescially the second half which will fall right over the Thanksgiving and Christmas holidays... Today, they gave her the higher dose of the Methotrexate again, the same dose that made her neutropenic last time. They are hopefull she won't drop too low since her anc was really good today. We gave her the benedryl and phenergan to help with the nausea on top of the zofran they gave her at the hospital, but apparently it wasn't enough... She is feeling pretty sick and miserable at the moment. I didn't take any pictures today because I am not feeling the greatest myself. My doctor told me the other day I need an endoscopy, but the doctor she referred won't be available till Halloween to do it... Anyway... So we both took naps today, and I didn't do much in the way of pics for the blog. I took pictures last time that give an idea of what her day at clinic and the RTU are like but haven't gotten those up yet. Anyway... She is feeling yucky, and sad.... Hopefully she feels a little better soon...