LabER Day Weekend

We had a free week with Brock's vacation over Labor Day weekend and decided to take the opportunity to head up to Choteau to see Brock's side of the family.  Grandma Susan had just finished up her full course of chemotherapy so we were excited to spend some time with her while she had some of her energy back!  When the time came to leave Billings we were unsure about going because Isaac had a fever.  He had just had tubes put in his ears the week before and hadn't really been acting as if he was any better (still grouchy and not sleeping well).  So I took him in to the doc before we left to make sure we were good to go.  He couldn't see any infection in his ears so we decided just to go and watch his temperature.  About 30 minutes before we got to Great Falls (about 90 minutes from Choteau) we noticed Kaelyn was acting unusually tired and sad.  I jumped to the back of the van to check Isaac's temperature and he was back to normal, but Kaelyn was 103! That's pretty high for someone on chemotherapy.  In Billings, protocol is to take your child in to the Pediatric Oncology office if they have a temp over 101.  But, we weren't in Billings, and of course, by the time we saw she had a fever it was after 5 o'clock so I couldn't get a hold of Kaelyn's doctor or nurses (doesn't this stuff usually happen at the most inconvenient times?!).  Also, my reception was in and out as we drove.  Luckily I had the number of one of Kaelyn's nurses.  We stopped at Walmart in Great Falls to try to find some form of Tylenol we could get Kaelyn to take to get her fever down (she is very anti medicine!).  We had spent about 2 hours in Great Falls and still hadn't been able to reach anyone in Billings.  Her temp had come down to about 101.5 and we started to head back to the farm because we didn't know what else to do.

 Not feeling so good on the drive.

About 30 minutes into our hour drive out to the farm we finally heard back from a nurse who told us to take Kaelyn to the ER for fluids and and IV antibiotic for preventative measures.  So we headed back to Great Falls and got to the ER at about 10.  As per the oncology nurses orders over the phone, we were to go the nurses station immediately and ask for some numbing cream so they could access Kaelyn's port for the blood they would need to draw and for the IV.  Well, they insisted they needed to access blood from a site other than the port.  It ended up being a bit of a fight between us (well, Brock) and the charge nurse.  And we lost!  After 4 attempts at getting access to a vein, they finally succeeded, but Kaelyn was VERY unhappy.  We had been through getting IVs going before this so we knew it wasn't going to be good.  It was hard not to be upset about feeling like the nurses didn't listen to us, or to Kaelyn's doctor, but it was apparent that it was more important to comfort Kaelyn at the time than to be upset.  So, Kaelyn got her bag of saline and antibiotic and her temp was back to normal and we could finally head back to the farm and get some much needed sleep (it is now 3:00 a.m.).  An hour later Kaelyn wakes up puking and she's back to a fever of 102.  We headed back to the ER later that morning, after we got a little more sleep.  Low and behold when we got back to the ER the same charge nurse was working, but this time Brock put his foot down and said "you are using her port or we are leaving!"  Needless to say, they finally used her port :)

Her eye is a little droopy from the neuropathy side effects of her chemo.  The neuropathy will go away when she finished chemo, thankfully!

  

The wait in the ER on the second day was pretty interesting.  Most of the time, though, was just that, waiting, and getting lots of fluids.  We had a friendly ER neighbor.  I was trying to avoid eye contact with him because whenever I looked at him he would pull a funny face.  Now imagine, this guy is like 50.  I look over and he is sticking his tongue out at me while his thumbs are in his ears and he's wiggling his fingers!  Now that's entertainment!  Awkward entertainment though, because I didn't know what reaction to that was appropriate!  Anyway, her fever wasn't going down this time so they decided to admit her.  Long story shortened, we stayed until Sunday afternoon when her fever had finally gone down and stayed down.  So in all that time we were only able to spend a day with family in Choteau since we had to leave Monday.  We were grateful though that everything turned out OK.  The whole reason we had to stay in the hospital was just so she could be on constant fluids, have her fever monitored, and have antibiotics administered by IV every 12 hours just in case whatever was causing her fever was bacterial.

Always the best part of a hospital stay!

Thankfully we still had Labor Day to spend with family to make this trip worthwhile!  It was so nice to see everyone and for Kaelyn to get some time to play with cousins, aunts and uncles, and grandpa and grandmas!

Playing outside with family

Yep. She's a warrior!

T-Shirts! T-Shirts! Get Your T-Shirts!

We are so excited to see that so many of you want a shirt to support Kaelyn in her fight, and the many other children and families facing the challenges of childhood cancer.  They are printed in gold, the color representing childhood cancer.  These shirts started as way to show support from Kaelyn's family, but we've had a lot of requests for shirts from others.  So, here's how it's going to go.  The shirts will be available for purchase from today, September 10^th through Saturday, September 15^th.  The following week the shirts will be made and shipped to everyone.

The prices are as follows:

 Adult - $20

Men's S, M, L, XL

Women's S, M, L, XL

(all shirts are only available in crew neck)

Youth - $10

S, M, L, XL

12 months, 18 months, 24 months, 2T

If multiple shirts are purchased, the price will go down.  For 2 shirts including an adult size, the price will drop from $20 to $17.50.  For 3 or more, adult shirts drop to $15.  Child sizes remain at $10.  Just to clarify, the prices of the adult shirts drop paired with both adult and/or child sizes.

Also, the prices listed include shipping.

INSTRUCTIONS FOR PURCHASE:

-Shirt sizes and styles can be found in the sidebar to the right.
-Each shirt ordered must be added to the cart individually to ensure correct size and price.

-For adult shirts, select the appropriate option that applies to your order.  For example:

-If you are ordering 1 shirt total, select the option for "1 Men's/Women's shirt." 

-If you are ordering 2 shirts total, select the option for "1 Men's/Women's shirt + 1 other shirt," then proceed to select the second shirt.  If the second is an adult shirt, you would select the same option, "1 Men's/Women's shirt + 1 other shirt," or if the second is a youth, simply select the youth size desired. 

-If you are purchasing 3 or more shirts, an adult shirt should be purchased as "1 Men's/Women's shirt + 2 or more other shirts." Then proceed to select the remainder of the shirts individually, specifying gender (if applicable) and size.

-As you add shirts to your cart, a separate window will appear showing the totals in your cart.  If you are not finished, select continue shopping to add more.

-When you are finished, you can choose to pay with debit or credit or with your PayPal account.  You will also be asked to provide a shipping address.

-Please allow us a couple of weeks before you receive your shirts.  We will be doing 1 bulk order so the shirts will not be shipped until the week following the sale of the shirts.

For any questions regarding the purchasing process, please contact Chelsey at chelserster@gmail.com.

  

Thank you so much to everyone willing to give to help with Kaelyn's medical bills as well as to give to the Make-A-Wish Foundation.  Kaelyn's wish to visit Disney World will be fulfilled in January 2013.

Catching Up

I suppose it's time for an update!  Let's see, I last posted about Kaelyn's shaved head.  Let me say, this girl loves it.  I hope she is OK with growing her hair back when she is done with chemo!

As far as Kaelyn's health goes (side effect wise), she is still doing really well.  The last 3 treatments she has gotten sicker than usual, with a little more nausea and vomiting and a lot of fatigue.  Also, we've really noticed the neuropathy setting in.  You can tell just by looking at Kaelyn.  You can see that her left eyelid droops a little bit.  Other neuropathies that you can't see in the picture include difficulty using her fingers and loss of balance and reflexes.  For example, a couple of weeks ago we took a trip to Utah.  We had been holding her, and we set her down because she wanted to see grandma.  She started to run, tripped, and landed face-first on the cement sidewalk without even attempting to catch herself.  Sadly that was when I first realized I needed to watch her better.  Since, I've been paranoid with slides, swings, and anything else that could pose a fall risk.  But luckily we haven't had any injuries since.  Just that one nice big bruise and scab for Durrant family pictures!

A couple of weeks ago we had routine x-rays and ultrasounds to make sure the cancer hadn't spread.  I can't remember the last time I felt so anxious.  Normally I don't have a difficult time going with the flow and trusting that everything will turn out OK.  I still knew it would be OK, but I still couldn't stop thinking about the negative possibilities.  Granted, the chance of the cancer spreading was rare.  15% chance to be exact.  So why would I be so worried about such a small number?  Because rare isn't so rare anymore.  You know, it's rare to have a child with cancer, but it doesn't seem so rare to me!  I know longer feel protected by anything prefaced by "rare."  To me, the meaning of rare has changed.  That's why I was so nervous.  That darn tiny possibility was still a possibility.  But again, we are so incredibly blessed and do not have to worry about any spreading cancer this time around!  I know that will still be a concern in the future, so hopefully I can learn to take things one day, even one minute at a time and live my life in the present instead of wasting moments fearing the future possibilities that are out of my control.

As for Isaac, our little side note, he got tubes put in his ears so we are hoping he will be a much happier camper and not have to worry about any more ear pain.  My kids make cute patients.  I won't deny it!

I still have more catching up to do.  I'll fill you on on Kaelyn's latest hospital stay in the next post.

I Don't Know Why You Say Goodbye, I Say Hello!

Hello baldy!  The deed has finally been done.  As sad as it was to shave Kaelyn's head, I am actually feeling some relief today that that step has finally been taken and is over with, and most especially that Kaelyn likes it!

It was just yesterday when I noticed Kaelyn's hair was coming out much faster than before.  With every stroke of her hair, tons of strands would come out.  She kept getting hair in her mouth, and in her food, and in her gum.  She called that "hair-gum." It was bothering her so much I finally decided we should just shave it off if is annoying her and falling out anyway!  So, I called a friend to borrow some clippers and waited, and waited, and waited for Brock to get off work so we could all do it together (except Isaac. He probably would have tried to eat the hair though, so that was OK!).  In fact, as soon as we got home and brought the clippers inside Kaelyn said "Let's do it mom!"  Brock eventually got home and we finally shaved it, all together! I have to say, it was kind of a fun moment.  It was breaking my heart a little, but the fact that Kaelyn was excited about it, and liked the "tickly" clippers, certainly helped make it easier.

Before the cut, I wanted Kaelyn to be prepared.  I kept asking if she wanted "hair" like Grandpa Ernie or Grandma Susan, and she said yes.  I didn't know if she was quite grasping was she was agreeing to, so I decided to pull up some pictures of another sweet fighter of Wilm's, Kaylee.  When she saw Kaylee cute naked head she got so excited for the shave.  Thanks Kaylee for your inspiration and comfort for my daughter!  And thanks to Kaylee's mom for posting those pics.

 

Very first look in the mirror!

 Today was our first day in public without hair atop Kaelyn's head.  I was ready for just about anything, stares, looks of pity, and comments.  We didn't get too much of that though.  There was one boy, probably 8 years old, who came up to Kaelyn and rubbed her head.  So, Kaelyn rubbed his head back.  He jerked away from her, but went to rub her head again.  I said "Hey! If you can rub her head she can rub yours!"  Was that to defensive?  I said it with a smile on my face, but in all seriousness as well!  He said, "What's wrong with her.  Was she born that way?"  Well, although a lot of babies are born bald, I didn't go into that.  I just made it quick and said her medicine made her hair fall out.  And that was that!  Our first experience with strangers and Kaelyn's new do.

Kaelyn continues to rub her head, Isaac hasn't noticed a difference, and I am still catching myself forgetting she has a bald head!  I know it won't take long to get used to it.  And, I'm not gonna lie, I already love it!

All tuckered out from playing in the too hot sun and jumping in the overly muddy sprinkler puddles!

Old News - Week 8

The past couple of weeks have continued to go well for Kaelyn.  She did respond with some sickness after each of the chemotherapy sessions, but for no longer than 2 days.  Each was followed by nausea and vomiting, tiredness, and weakness.  She seems to be back to herself by day 3.  Also, Kaelyn's hair has started noticeably thinning.  I noticed more hair being vacuumed up and on Kaelyn's pillow case, but it wasn't until I mentioned to others around me that her hair might be thinning and they replied "Yeah, I noticed," that I really accepted it.  It is just thinning so far, and depending how I do her hair, it isn't always noticeable.  Usually if I pull her hair back her receding hair line shows as well as her widening part, but if I leave it down it isn't really noticeable at all.  So I will continue to play this waiting game to see if we will end up shaving her head.  I wish I could get my mind off it though!  It seems like I'm constantly monitoring her scalp, trying to determine if the thinning has slowed, or worsened.  Just today I've finally been able to calm down a little bit and try to forget about it because no matter how much I think about it, whatever is going to happen, is going to happen! 

This pic was actually taken later than this post was written.  This was when I decided it was time for a shave.  See next post!

We just finished 2 weeks of swim lessons.  Aside from the lack of lessons provided, and the lack of heat in the water, I guess you could say it was fun!  Every kid was crying to get out of the pool before it was even halfway over every day!  The water was way too cold for those kids.  And even worse?  It was a parent and child class so I had to get in too ;)  I was sure missing that triple digit weather at the time!  But, Kaelyn now knows how to "scoop and kick" even better than she did before!

Kaelyn mid-butterfly stroke. 

As for the Make-A-Wish update, we will for sure be going to Disney World.  I have heard so many great things about what is offered there for wish children and I'm excited for Kaelyn to experience it.  There are still a lot of details to iron out, but the nice thing is we don't really have to worry about any of that!

Week 6

We are officially 1/3 of the way done with chemotherapy! Well, I'm rounding up a little... we just did week 6 chemo today and we have 19 total.  And, Kaelyn still has her hair! She is one lucky girl.  Though, I don't really think it would have bothered her had she lost it.  I know I would have been able to handle it too, but I am grateful that she has kept it so far.  It is still possible that she could lose it at some random time, but we will see.

Yesterday we had a couple of Make-A-Wish volunteers stop by to visit with Kaelyn and find out what her interests might be.  We filled out some paperwork while Kaelyn colored with markers.  Lucky girl.  I never let her use markers unless they are the Color Wonder kind!  We aren't entirely sure what she will be wishing for, but I'm thinking it will end up being a Disney wish since that is what she is most familiar with right now.  Disney World offers some special treatment for Make-A-Wish kids, so I'm thinking that may be where we will go.  I'm so grateful that Kaelyn has this opportunity and for the volunteers and those who donate to the foundation to make this possible.  These kids really deserve it.  I actually read a news article last night about a dad who refused to sign off on his daughter's wish to go to Disney because she "wasn't sick enough."  He said wishes should only be granted to those who have a little time left to live, to make a last memory.  That is not what Make-A-Wish wants to provide for, though.  Though those children would definitely be included, Make-A-Wish's purpose is to provide time away from treatment, where a child doesn't have to worry about their regular, every day life of doctor's visits, pokes, tests, and the lack of childhood!  I think the Make-A-Wish foundation is so awesome and again I am so grateful for them.

Kaelyn is still doing so well.  She had a  mouth sore last week, which is usually due to low blood counts.  Her CBC came back with normal results though, so I think it may have just been a large canker sore.  Next week she receives the medication again that will potentially lower her blood counts, but so far it has never gotten low enough to cause any concern, maybe just cause a little bit of tiredness, but no immunodeficiency.

I am so grateful to everyone who has let Kaelyn and us know that they care, who have given gifts or other things to help, or who have just expressed concern or offered prayers.  I don't think things could be going any better for us right now.  We are truly blessed!

I hope this isn't inappropriate.  This is Kaelyn's preferred clothing choice.

Showing off her new Make-A-Wish hat.

Round 3 - Year 3

This past Thursday Kaelyn had her 3^rd round of chemo, and she is still doing great.  They said she would probably lose her hair this coming week, and if not, definitely after she receives the dactinomycin again on Thursday.  I'm still holding out hope that she won't lose her hair, since it is possible not too! We will see though.  I find myself playing with her hair all the time, just running my fingers through it.  I know in the grand scheme of things it is a completely unimportant aspect of our lives, but I will be a little sad to see it go.  Mostly because I worry it will be different when it grows back, and I fear it won't be as cute :) I'm sure it will be though.  At the appointment we found out they would be upping her doses because she's back to her normal weight since surgery.  She had no trouble getting back to where she needed to be :) As far as lab results, the only thing that was low were her neutrophils.  They actually weren't necessarily "low," just lower than normal, and that was a good sign because it meant the medication is working.  It is likely her blood counts will be affected more in the future and the medication builds in her system.  Usually the only problems in that area with Wilm's patients are low platelets, and possibly low RBCs, which would require a transfusion, but that is about it.

Kaelyn's birthday was last Tuesday, and she's had a lot of celebrating leading up to it with family visiting.  She definitely got lots of presents, including a cute sandbox for the backyard, a kid's camera, and a cute little teepee her dad made for her that she adores.  Since Brock was working for 14 hours of Kaelyn's birthday, we just did fun things that Kaelyn wanted to do at home, like decorated her cupcakes, played in the sprinkler, and painted with water colors.  Then we visited Brock on his lunch and went out to Red Robin, mainly because they were the only place I could find that still sings to customers on their birthdays!  The only downside of that, Kaelyn hated it!  I don't know why, but she just glared at all the people singing to her.  It was a little embarrassing to be her mom at that moment!

One of my favorite parts of Kaelyn's birthday was when we got the mail.  It wasn't intended to be associated with her birthday but it did make it more special.  Kaelyn got a letter from "Make a Wish Foundation" telling her she was eligible to Make a Wish! I had always thought that these wishes were granted for terminal children, but apparently they are for any child with a life-threatening illness, so if you have a child in that category you should look into referring your child, or one that you know.  Rae opened the letter with me, and a bunch of little silver confetti stars fell out of the envelope.  It was so cute.  I'm so grateful that she will have this opportunity.  I will tell more about how the whole process goes in a future post.

As for Isaac, he is now walking all the time and picking on Kaelyn as much as he can.  Right now it makes me laugh, but I know it won't be too long before I'll be annoyed with it.  It's just funny to see how little he is (referring to age, not size) and how he already tries to get a reaction out of Kaelyn.  He mostly just like to jump on her if she's laying down, or grab her clothes and pull on them, or take something away from her (which she has done plenty of times to him!).  She screams at him and he laughs.  The other day Kealyn and I were laying in her knew teepee and Isaac came in trampling us.  I said "Ow!" in an exaggerated, joking way and Kaelyn got really mad at Isaac.  She said "Isaac, don't hurt mom!"  When he did it again she said "ISAAC – (long pause) YOU STINK!" That cracked me up.  She was so serious.  I think it was her first real insult to her brother, so I expect more to come soon.  I'm laughing now, but I'm sure that will change quickly!