Mostly Up

Last night ended on a high note with Kaelyn being allowed to drink a couple of ounces of chocolate milk, after much begging on our part.  She was definitely in heaven for the 60 seconds of chocolate milk, and thereafter.

Following such a delightful snack, Kaelyn slept through the night, nearly until 10 o'clock the next morning!  Because she did well with the chocolate milk, she was OK'd to try some breakfast.  She was so happy she was allowed to have scrambled eggs and gobbled them up in no time.  She had some cream of wheat and a small vanilla milkshake on the side.  It was bliss!

She had lots of visitors today, which meant lots of gifts too!  Thanks to everyone for thinking of Kaelyn, the gifts have definitely cheered her up!

As far as progress made today, Kaelyn had breakfast and a little but of lunch, chicken nuggets and fries by request (healthy, I know, but at this point she can have whatever she wants).  She has not eaten anything since then, but a couple other things have changed since then too.  The pain management team decided, with our approval, to remove the epidural and move on to oral pain management.  Kaelyn took her first dose of oxycodone without it even phasing her.  They removed the epidural 30 minutes later, making sure there was an overlap in meds to avoid pain, and conserve pain control.  When it came time for Kaelyn's second dose, though, things did not go as smoothly!  Normally Kaelyn does NOT like to take liquid medication by mouth.  We've gotten use to chewable Tylenol at home, but they don't have anything available in that form.  Actual pills cannot be broken up and mixed into food because her dose is too small, about a third of a pill, and so that would be to difficult to measure in an exact amount.  So, when the time came for the second dose, Kaelyn was in a little bit of pain and was fighting having to take the drugs.  I don't think she even got half of the dose down that she was supposed to take, so the pain returned quickly.  Our only option at that point was Tylenol, which she still fought.  So, she is still in pain, and it's hard to help her understand how we can help that pain.  It looks like she is reverting to sleep in order to block out the pain.  The only problem with that is she isn't getting up and walking around like she should be.  As a parent, I just want her to be comfortable.  It's really hard to see her in pain, especially when typically she is so tough and doesn't complain about owies... though she does like band-aids!  

Today Kaelyn's oncologist came in to discuss a little bit of the pathology report.  They actually have not received the report back, but she talked with the pathologist over the phone.  The report has not come back yet because the pathologist found some cells that were atypical of Wilm's tumor, though the majority were Wilm's tumor.  The oncologist isn't too worried.  Those cells that are atypical may be so just because of some simple staining errors, or they may be teratoid cells.   If they are teratoid cells, the treatment would still likely have a positive outcome, there may just need to be a change in the type of chemotherapy.  So, we are hoping to hear back by Monday.  The pathologist sent samples on to an "expert pathologist" in Houston, TX, for a second opinion, so that is what we are waiting on now.

As of today, our hopes are to be discharged by tomorrow so Kaelyn can go to the zoo.  Hogle Zoo is hosting "Dream Night at the Zoo," a private evening set aside for children with chronic illnesses or disabilities.  They will be showing their newest exhibits, serving dinner, and will have several activities for the kids.  We were lucky enough to get 5 tickets, but we'll be even luckier if Kaelyn can go.  That is dependent, though, on her pain control at that point.

So, today has been mostly up.  Sometimes it's hard to remember how positive the day has been when you are currently stuck at a low point.  Our next challenge is going to trying to figure out how to help Kaelyn understand the purpose of the medicine and how it can help her.  The more she refuses to take the medication, the worse the pain will get.  I know we will need help beyond ourselves to help Kaelyn to understand, so all prayers would be appreciated.  I know this is going to take time, some pain on Kaelyn's part, and some discomfort on our parts seeing her in pain, but I just have to remember how easy we have it, and I'm just so grateful to know we get to keep her around with us.

Tomorrow will be better!

Blue Cookies

Last night was glorious.  My parent got us a room in a hotel about a block from here, and I don't think I've ever slept so deeply!  Isaac was with my mom in Morgan and my dad stayed at the hospital with Kaelyn.  And that bed was so comfy.  I can't stop thinking about it!  Haha.  Kaelyn slept through the night again, which is great.  I keep worrying she will wake up in pain, but so far we haven't had to worry about too much pain, thanks to the epidural.  I'm worried about switching to oral pain medications, whether they will work as well, or whether or not she will take them.  That is too worry about for another day though.  Today's focus is again on getting Kaelyn to drink fluid.  Yesterday she was OK'd to have sips of clear fluid, and today has moved up to clear fluids.  She has been pretty reluctant to drink anything, though, because she wants food!  My dad said she was saying "blue" in her sleep last night.  All day yesterday she was asking for a blue cookie.  I don't know where this blue cookie came from (I'm wondering if it might be the blue Oreo packaging??) but by golly when she can eat she'll get all the blue cookies she wants!  I think blue cookies do have some kind of cancer-fighting qualities anyway.

Kaelyn is supposed to be walking 4 X a day.  We are just about to head out for our 2nd walk.  She has done really well with this.  She never wants to stand up, but once she is up she doesn't have a problem. 

We met with the surgeon this morning and he said we should have the results of the pathology report by tomorrow.  We are pretty much waiting on that little report to answer all of our lingering questions!  So we will be very excited when those results come in.

Again, the surgical team came in this morning and is very pleased with how well Kaelyn's is doing.  They removed the bandage over her incision today and it didn't bother her so the left it off.  It's about 7 or 8 inches across her upper belly, starting from her left side and ending just past her belly button on the right side.

Sometimes I worry I over do it on the pictures, but I've had complaints of not enough so the remainder of this blog post will be dedicated just to that!

 Grandpa Ernie hiding from Kaelyn.

 A view of Rae's hookups.  They actually took out her IV since they have her port for medications, so she's down 1 today!

 This morning's walk... or ride.

We love this girl so much.  It's been nice to spend some one-on-one time with her, and to watch how well she is enduring all of this.  She asks for food all the time, but quickly gets over the fact that she can't have any.  I certainly would be behaving much differently if I had to go for days without food!  Looking through these pictures, it looks like we have lots more fun here than at home!  Kaelyn can make lots of messes and someone else will clean up after her.  That's one of my favorite parts.  :)

I will continue to update when more info comes in, but we're pretty much on repeat until that pathology lab comes back.

Hospital Stay Day 2

Kaelyn has continued to do well since her surgery yesterday.  She was probably only awake for a total of 3 hours following her surgery yesterday.  She mostly just shook her head yes and no to answer and questions, and flashed several smiles.  A little while before she fell asleep, she said her first word since surgery:  "Hamburger."  I have no idea why she said hamburger when she has never really had an actual hamburger, but at the same time it broke my heart a little because it was such a simple request that she totally deserved but she is not allowed to eat or drink yet.  Such a bummer.  She took it well though, and luckily was back to sleep and slept through the night.  It has been a little more difficult today to take her mind off food.  They finally agreed to let her have sips of water.  She is not allowed to eat or drink anything because her bowels were put under a lot of stress during surgery.  They were moved out in order to remove the tumor, and it can take them a couple of days to get back to normal.  We are all hoping for farts and poops here, pardon my french.  When she starts making that kind of progress we can work towards eating.

Rae (that's her middle name) has been doing well in every aspect and has really surprised me.  Around 10 o'clock today we asked if she would like to go for a walk and she said yes.  It was a little difficult to start.  She was taking tiny steps and complaining of some pain, but once she realized she could do it we were having trouble keeping up behind her with her IVs and such.  We walked about 400 ft to an outdoor patio with lots of fun toys for kids.  Kaelyn laughed and smiled and had lots of fun with the bubbles out there.  She was a little tired after that so she rode the wagon back to her room.

The hardest part today has been trying to convince Kaelyn to wait for food.  We have yet to hear from the doctors today but when I do I will update everyone.  For now, though, it's nap time :)

Post-Op

I am very happy to report that the surgery is over and went well!!  Thanks to everyone's prayers and the skilled docs and nurses.  Kaelyn was in surgery for about 5 1/2 hours today.  They removed the tumor without any problems, and the surgeon reported it to be about the size of a canteloupe, which was a bit larger than we expected.  It's hard to imagine something that large in the abdomen of an almost 3 year-old.  She is such a trooper though.  The doctors (and we) have been pleasantly surprised how well she has taken everything.  They had a room prepared for her in the pediatric ICU, but she has done well enough to not have to stay there.  Also, they said she was smiling when she woke up from surgery.  I surely wouldn't be smiling!  She has been asleep for the most part of the 2 hours we have been with her, which I am happy about.  I don't want her to be in pain, which I'm sure is probably inevitable but I am fine without for as long as possible!

I just love this girl.  I know I've said it before, but this whole experience has not felt as sad as I would have imagined it to be.  I mean, I do not like to see her in pain, of course, and I do not look forward to the chemotherapy and other uncomfortable treatments and side effects she will have to go through, but really it has just opened my eyes to how very blessed we are to have Kaelyn, that she is still in good health, that we get to keep her here with us, and also the eternal perspective the gospel gives that no matter what happens, her body will be restored and we will always be together.  This has also helped me to understand faith so much more, and to feel of it's power.  Kaelyn has inspired me to have this faith, as I know how much the Lord loves and cares for her.  I will be forever grateful to have had the opportunity to have my little family unit and the trials that have brought us closer together thus far.

Isn't she cute though?!

Big Day

Well the day is finally here! I can't wait to get this over with.  We had a good weekend spent with family.  Grandpa Nevin and Grandma Susan were able to come down to Utah to spend a couple of days with Kaelyn.  We also visited some family grave sites over the weekend and were able to spend some time with extended family.

Kaelyn's "going-away kidney party" was a huge success.  Cold Stone created a delicious cake to celebrate the event.  Kaelyn definitely loved it.  She even got money and a birthday card from a confused grandparent.

The weekend was great, but there was no fooling Kaelyn when we woke her up early this morning to bring her back to the hospital.  She is now under the impression that if we are going anywhere in the care with just Mom, Dad, and her, that is where we are going.  She's right though, it is!  She was definitely bummed to be back at the hospital, but on the upside she was giving lots of hugs.

At about 8:30 we gave Kaelyn some medicine to sedate her to help with separating from us and going to the OR.  She was very happy on that stuff!  They took her back at 9, and now we are just playing the waiting game.  We receive updates from a nurse in surgery on our cell phones, and so far everything is good.  Thanks to everyone for your thoughts and prayers.  Again we are feeling very good about everything so far and we trust that everything will go well.  We love little Kaelyn so much!!  Thanks for checking in on her. 

Farewell, Old Friend

Well, this will be Kaelyn's last weekend with 2 kidneys.  Monday we will be bidding adieu to Kidney 2.  I'm hoping to have a little farewell party for him this weekend.  I'm not sure how many organs are properly sent off in these situations.  I want Kidney 2 to know we appreciate all he has done for our sweet Kaelyn.  It was there through diaper sizes newborn to 4, and even got her through the potty training milestone.  I like to think it was present for some of the most important kidney achievements in life.

Kaelyn has her big surgery on Monday, Memorial Day, scheduled at 8 a.m.  We were told she could potentially be in the ICU depending on how she does.  So far she has proved to be a fighter, from kicking the nurses trying to take her blood to beating the sedation for the CT scan and needed a second dose.  The surgeon said to expect about a week in the hospital to recover from the surgery.  A few days from the surgery we should finally be able to find out the official diagnosis, stage, and prognosis, as well as the type and duration of chemotherapy.

For Kaelyn's last weekend of freedom for a little while we are going to the airshow at Hill Air Force Base tomorrow.

Today we were scheduled for an ultrasound to make sure the tumor has not spread into any blood vessels, and to make sure everything looks OK before surgery.  And everything did look good.  It is so weird to see how large the tumor is.  It really just baffles me!  Have a look.  This is a view of the CT scan from Thursday:

 

Happily today Kaelyn has had a lot more energy compared to the last few days.  I'm glad she's able to enjoy these few days with family before her surgery.

Once again, I am so grateful for the way things have gone with this whole thing.  From Kaelyn's primary physician finding the lump, to being sent to Primary's and having family near.  There are so many little tender mercies that I cannot even name them all.  Thank you to everyone who has offered prayers and help in many other ways.  We love you all!

WARNING:  I am so tired this may not make sense!

Today was another good day.  Despite last night!  Just before we went to bed I noticed a little lump along Kaelyn's spine.  Normally I wouldn't think much of a lump, it just the last lump I saw on her turned out to be CANCER.  I don't think I'll be able to see that as something minor for a while!  I was pretty stressed and couldn't sleep.  I guess the majority of what made last night so terrible was the anxiety of what could happen tomorrow.  Everything turned out great though.  The lump disappeared when we got to the hospital.  It was gone on examination, although it was still there when we left the house!  After about an hour of trying to get Kaelyn to drink the Sprite spiked with contrast, we had to wait another hour for it to coat her insides, and then she had the CT scan.  We found out the tumor is about 10 cm in diameter (pull out a ruler to get an idea of how big that is).  In an almost 3-year old, the scan shows the tumor takes up the entire left side of her abdomen.  There is hardly any kidney left there.  So, the surgeon says we will be removing the tumor and the left kidney on Monday.  We still will not know for sure the type of tumor she has, because the biopsy will be done after it is removed.  Therefore, we don't know the stage of the cancer either.

I will have to post a video of Kaelyn under sedation tonight.  Pretty funny stuff :)

UPDATE

Just an update for those of you who read my last post, Kaelyn's CT scan was moved to tomorrow, the 24th.  She seems to be in much better spirits today and handling her pain better. Hasn't lost an ounce of sass.

The C Word

It's time to turn over a new leaf and keep my family and friends updated, especially now that I have something to update about!

Today was quite the eventful day.  See below:

Today we had a planned recheck with Kaelyn's primary doctor.  I took her in a couple of weeks ago because she had a prolonged fever and suspicious cough.  We left with the answer that it was a virus, so there wasn't really anything we could do.  The doctor did, however, find a suspicious mass on her left side.  In order to rule out stool causing the lump, he asked that we follow up in 2 weeks.

Here we are, 2 weeks later.  The last few days Kaelyn has had fevers, again, this time associated with pain in her left side, just below her ribs.  When we took her in for her recheck, the doc asked us to go to the ER because of her acute pain in the abdomen.  Of course it was a nice long 4 hour visit in the ER!  After some tests, Kaelyn's doctor decided the pain was being caused by a bladder infection and was sending us home with an antibiotic, and would have us check up with the primary doc the next day.  Brock and I were not satisfied with this answer!  We both had gut feelings that this was something more, and me, Mrs. NOT-assertive, asked the doctor to do an ultrasound because we weren't comfortable leaving (proud moment for me:)).  He obliged, and we found out about 15 minutes later that she has a tumor in her kidney.  More specifically, a Wilm's tumor.  I don't think the news hit me until the doctor used the infamous term "cancer."  Whaaaa??  At the same time though, I have felt this coming.  I knew some big bad thing was coming to get us, I'm just glad it's finally here and I don't have to worry about what the mystery is.  We can start working on getting through it now, one day at a time of course.

We head for Primary Children's early tomorrow morning so we can get there in time for a CAT scan.  I was surprised how fast things were getting started, but I'm also so happy I don't have to wait around for them to start.  I am kind of surprised how blessed I've felt through this whole day, as opposed to a doom and gloom feeling.  Oddly enough it's almost seemed to be a positive day.  Granted, tears were shed and sad thoughts were thunk!  But I have just felt an increased measure of love for my family, my Savior, the gospel, friends, and all the little things in life.

We would be so grateful for all prayers in Kaelyn's behalf.  I will do my best to change my ways and become an avid blogger for those of you who care.  I love you friends and family.  Until next time,