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,