No News is Good News

That is the case for us this week!  Forgive me for not updating, but there hasn't been too much to update on, which is great.  As I mentioned in my last post, Kaelyn had a little trouble with nausea and vomiting following her first round of treatment.  That was not the case with the second round she received Friday.  I hadn't realized this at first, but only 1 of the 2 drugs will make her nauseated, and she only gets that drug (dactinomycin) every 4 weeks.  So that is a plus!  So as for the drug she is receiving now, I don't think we've seen much in side effects.  I'm not entirely sure though, because it is hard to tell what may be normal for Kaelyn and what the drug may be causing, especially as far as her mood goes.  She has been so SO needy!  Needy, whiny, and moody.  Don't get me wrong, I love the girl, but there are only a few rare moments in the day where she isn't wanting me to hold her.  It's hard to know if it is a 3 year-old thing, or a reaction to the past month's events, or just feeling different with the drugs in her system.  With those things in mind, I am not exactly sure how to respond.  Most of the time I give in and hold her, though I try to give her other options of things to do.  She will usually opt to be held, or to be held AND do whatever activity I bring up!

This past Sunday was the first since before her surgery that she has attended and made it through nursery (2 hours of play at church with other kids under 3).  She is OK to go to nursery since her blood counts are usually unaffected by the drugs she is on.  Anyway, it was nice that she was able to take her mind off other things and just enjoy playing with friends.  I am so grateful that she has the option to do so while on chemo.  Every day I think how thankful I am that she can be outside in her new sand pile, or playing in the water, or going to the park with friends.  So far she has been able to live a normal Kaelyn life.  I know that isn't the case for a lot of patients on chemotherapy.  I also know that things can change very quickly.  The longer she is on chemo the worse it is expected to get, so I am prepared for that, but again we have been so blessed.

 This guy loves the swings!

 Oasis - overpriced.  But Kaelyn's happiness was priceless!

 These 2 could have stayed here all day.

Tomorrow is Kaelyn's 3rd birthday.  We have had family here visiting the past 2 weekends so Kaelyn has pretty much been celebrating this birthday for 2 weeks!  Her one request is chocolate cupcakes with pink frosting.  I'll be sure to post some birthday pics.

Again, thanks to everyone following up on Kaelyn.  Right now she is doing great and we are enjoying this time while we have it!

Round 1

We spent our last few days of chemo freedom playing as much as possible.  Though, we are very lucky and Kaelyn's play shouldn't be affected to much by the chemotherapy.

It's amazing to me how many random strangers passing us by know about Kaelyn's situation.  But then I turn around to see Kaelyn behind me and realize it is because she is lifting her shirt to show everyone her awesome battle wounds!  That is a great way to spread the word :)  It has given me a lot of opportunity to share Kaelyn's story, and to come to hear others experiences as well.  And speaking of showing the world her exciting belly, yesterday after Kaelyn had her first treatment, we stopped by Costco before heading home.  Her Grandma Lesli called to check up on her and she took her entire top off while riding in the cart to "show" grandma her bandaid covering her port.  The funniest part is I was observing Costco products and didn't even notice until I heard another customer laughing.  Whoops!  I'm glad that she finds joy in showing off her tummy though.

Before Kaelyn's appointment we had the opportunity to get some family pics (something we wanted to do before Kaelyn loses her hair).  We were lucky enough to have a friend offer to do some.  Family pics can be somewhat nightmare-ish with kids, but in the end I think they worked out thanks to an awesome photographer.  She shared the following pic with us:

Yesterday afternoon we met with Kaelyn's doctor, pediatric oncologist Paul Kelker.  We all like him very much.  He's had a few patient's with Wilm's tumor and is very positive about how things will go.  I have heard multiple times from multiple docs that if they had to pick a cancer for their child it would be Wilm's.  It sounds weird to say that, but it's true! It has such a great prognosis comparatively and we feel so lucky to have fallen into this category.

After getting to know the doctor and his nurse, they accessed her port (SO much better than an IV!) to draw some blood and administer the chemotherapy drugs.  (Before we go to her chemo appointments we apply some numbing cream to her port area so she does not feel any pain.)  They gave her vincristine (commonly used to treat childhood cancers) and dactinomycin (one of the very first chemotherapy drugs ever).  Thankfully the side effects of these drugs in children are mild and somewhat minimal.  The most common side effects with vincristine, the more toxic of the two, are constipation, hair loss, and neuropathy (nerve damage causing loss of sensation and movement, and nerve pain).  Hair loss typically occurs between weeks 2 and 4 of chemo.

A few hours following the administering of the drugs Kaelyn got very sick.  She threw up constantly for about 90 minutes.  While in the doctor's office they had mentioned giving her some Zofran (anti-nausea) but we all forgot with everything else that was going on.  Besides that, nausea isn't a typical side effect of these drugs.  Luckily I had some Zofran of my own on hand from my last pregnancy.  I called a pharmacist and asked about what dosage I could give her, and after our second try we got her to keep the Zofran down and she hasn't thrown up since.  Whew! I am so glad I saved that :) Today she seems to be feeling well and is doing great.

Kaelyn's next chemotherapy treatment is next Friday and I will keep you posted of anything that comes up.  Thanks again for all the prayers, thought, and gifts in Kaelyn's behalf.  We are so blessed to have so many who care.  Thank you all!

Back in Billings

I haven't done much updating because life has seemed to slow down and normalize since being in the hospital.  Not much has been going on besides unpacking and recovering from surgery.  Kaelyn has continued to do well, but occasionally complains that her tummy hurts.  She is walking more and more, and even climbing a little, though she is still very cautious and slow.  I am very pleased to report, though, that she has gained a little weight back and she looks healthy again.  Kaelyn lost about 4 pounds in the hospital (a lot for a little tyke!).  I'm not really sure how much of that was the tumor versus actual weight lost from not eating.  Nonetheless she has been eating like a teenage boy, or similar to her brother Isaac, and is gaining it back.

 Here Kaelyn has snagged Isaac's snack and is studying cloud shapes.

 

Playing outside Grandma Lesli's house.  You may have a better understanding of 

how Kaelyn is eating as you view this picture of her brother Isaac.

Life has been a little different from before we found out about the tumor (Aside from the surgery and cancer!).  Kaelyn's mood seems to have changed a bit.  She wants to be held more, she seems more shy around others, and, well, she just wants mom a lot of the time.  I don't know if this is in relation to her pain or something else.  I know in the hospital they talked a little bit about how these types of experiences can change a child.  They can affect their personality and even cause depression.  I am not about to jump to any conclusions.  For now I am thinking it is in relation to recovery from her surgery, but it does worry me a little and makes me feel the need to step up as a parent to try to help Kaelyn understand what is going on and that everything is going to be OK.  I have found that very hard though.  I am sure that I am underestimating Kaelyn's capability to understand things.  It just seems that she has no idea what is going on.  I would welcome any advice on how to help her better understand her situation.  The good thing, though, is so far she seems to be going along with everything very well.

 

 

 We came home to all of this on Wednesday! We are so lucky

to have made wonderful friends here in Billings. Thank you friends!

While Kaelyn was in the hospital, she had a catheter.  Now Kaelyn had finally achieved potty training about 10 days before all of this happened.  That achievement has gone "down the drain," if you will.  The first few days after Kaelyn was out of the hospital I kept thinking about how annoying it was going to be to go through the whole potty training cycle again.  Kaelyn was so resistant to it the first time, and I was sure she would follow the same pattern.  I have to remember what one of the nurses said in the hospital though:  "Potty training is overrated."  Of course, he was joking when he said this, but the more I've thought about it I've realized it truly is in the grand scheme of things.  When life is going great, it is easy to put focus on unimportant things.  Not that potty training isn't important.  It just seems that when it is a parent's main concern, it's importance is blown out of proportion.  Does that make sense?  The more I've thought about this I've realized how grateful I should be that potty training is even an option in Kaelyn's life.  Having spent time at Primary Children's Hospital, and knowing many children with various illnesses, I have seen that potty training may never be something that occurs in the lives of some children.  I recently complained out loud about having to go through the process of potty training again to the mother of a child with a rare neurological disorder.  Now, I'm not sure if her child is potty trained, but I doubt it knowing what I know about the disease.  I immediately felt like a big idiot and realized how trivial my worry was.  I hope that through these experiences I will continue to learn to be grateful for the little things in life and become more aware of the struggles of those around me.  Everyone is struggling with something and I pray that I can always remember that and be grateful for my circumstances.

My husband recently made a few of these signs.  I love this quote.

 

As of now we are T minus 6 days and counting until we begin chemotherapy treatments.  I still don't know a lot about what Kaelyn's side effects will be, or what we need to do to prepare, but I hope to know more on Monday.  I have high hopes for this girl.  One really high hope is that chemo will bring Kaelyn a love of fruit. Ha! I have no clue why she does not like ANY variety of fruit, but I have heard taste preferences often change during chemotherapy, so here's to hoping!

Good News

Forgive me, I've been a little slow to add the latest updates.  It's harder to jump on the computer and blog when you have two children to watch, and neither of them are stuck in a hospital bed!  Just wait until I have more.  I'm sure you won't hear from me at all then.  Ha!

We had a pretty good weekend, probably better than I expected.  Kaelyn again has handled the pain pretty well.  She is very protective of her stomach area and takes things pretty slow still.  She occasionally says "owie" when she bends the wrong way or is hit or bumped.  The past several days Kaelyn has usually taken a dose or two of Tylenol.  She agrees to take this because we call it "bubble gum."  It is bubble gum flavored chew tabs, made by Equate.  Brilliant.  Even I think they taste good!

The weekend seemed pretty long, especially considering the fact that we were awaiting some potentially scary pathology reports.  Gratefully, though, we heard back on Monday, 2 days earlier than we expected to hear back.  Dr. Jensen, the oncologist at Primary's, called me Monday afternoon to discuss the results.  I was overjoyed to hear the results came back as a standard Wilm's tumor, Stage 2.  Awesome!  The pathologist in Houston was able to verify that it was just Wilm's, as opposed to teratoid Wilm's.  The technical name is a nephroblastoma, and, in layman's terms, blastoma pretty much refers to cells that look irregular and not necessarily all alike.  Does that make sense?  So they thought there was a possibility that some cells looked like bowel tissue, but the expert in Houston, who has seen many nephroblastomas, was able to confirm standard Wilm's because she has seen many similar cases to Kaelyn's.  Such a relief!  So, this means we can return to Billings and take care of Kaelyn's chemotherapy there.  We still have a lot of information to discuss with the pediatric oncologist, but we do know Kaelyn will be able to be on a pretty mild regimen of chemotherapy, and for only 5 months as opposed to the expected 6 months.  We still are not sure of the potential side effects of her medication.  We will probably be starting her chemotherapy within the next week.

Although I have truly enjoyed spending time in Morgan and having the support of family and the friends I grew up with, I look forward to returning home to Billings and being able to control my own environment again, somewhat!  Mainly bedtime / nap time routines and meals.  I always feel a little frazzled living out of a suitcase.  Also, my parents can hopefully get back to focusing on their busy lives.  They have been an amazing help and support to us, as well as  my sisters driving to Morgan to help take care of Isaac.  In fact, my sister Raegen even changed one of Isaac's poopy diapers.  She should surely chalk that up as an accomplishment.  

 Visiting Great Grandma Durrant's neighbors bunnies

 Throwing rocks in the river.

 So, right now we are 3 hours into our trip home.  We stopped to rest in Rexburg so we wouldn't have to take one excessively long trip because we did not know how Kaelyn would do in her car seat with her incision still sore.  She did really well today, though, and didn't complain of pain until we got out of the car.  She spent a good hour of the trip singing "Row, Row, Row your Boat" to us on the way.  It was entertaining.  Isaac spent the majority of the trip either eating or crying for more food.

I'm excited/nervous/not at all excited to get started with chemo.  I still do not know what to expect, but I just want to get it over with.  I know Kaelyn is going to do great though.  She continues to surprise me with her strength on a daily basis.  I'm not saying she doesn't milk this situation a bit and get a few extra treats here and there ;) But hey, that just shows me she's smart too.

I'll update in a couple of days when we've learned more about her chemotherapy and when we will be starting.

Goodbye Hospital!

We had such a great time at the zoo on Friday.  We had only been discharged from the hospital about an hour before arriving.  Kaelyn really enjoyed seeing all the animals.  It made me so happy that we could spend a night doing something fun with Kaelyn and family, and for free.  It was an amazing experience seeing all the children with medical needs just enjoying their time at the zoo.  I think the animals knew these kids were extra special because they were all putting on a good show!  I've never seen so much action at the zoo.  It seems like most of the animals are usually just sitting around, sleeping, or eating, but they were quite active, and interactive, while we were there.  An especially exciting time was watching the tigers (fight? play? mating ritual?).  Whatever they were doing, it was fun to watch!

Today Kaelyn has been pretty tired and a little moody.  She is very particular about who can hold her because she doesn't want her tummy hurt.  We have to be really gentle about how we handle her.  The last couple of days have been really difficult to look into her eyes.  They aren't the same.  They have dark circles around them and are sunken in.  Since the surgery she has also lost weight and is very fatigued.  I hate that when I look into her eyes, even when she has a smile on her face, it hurts my heart.  I want to be able to look past the sickness in her face.  I'm sure this is all a result of the surgery, but it just reminds me of what is to come.  It reminds me that I need to be STRONG for Kaelyn, and for the rest of my family.  I have complete faith that we will get through this, but I am nervous for the "getting-through it" part!  I know that my attitude and faith will directly affect Kaelyn, and I want to be a great mom to her when she is going through this.  I know I've said and said this, and who doesn't love their child, but I just love this girl!  She has already given me so much strength in just the last 10 days!!

Rewinding just a bit though, Kaelyn's last day in the hospital went pretty well.  Again she refused any medications, but handled the pain pretty well.  It really is hard to not be able to take that pain away from her.  Not even kisses help the pain :(.  She continued to eat and drink well, though, which is what eventually got her out of there a little earlier than expected.  The last day in the hospital meant removing the remainder of her bells and whistles.  The simple things were the leads and IV lines connected to her port.  The stuff she hated were the adhesive bandages and Huber needle, which was in her port.

We did fit in a lot of play time for her last couple of hours there as well.  Kaelyn was getting so used to having her little mobile IV and medication stand constantly by her side that she started pushing it along to wherever she wanted to go.  It was kinda funny, especially since it is about 3 X taller than her!  Here are a couple pics in the playroom:

We returned to Kaelyn's room and found a bouquet of blue sugar cookies!  Thanks to Josh, Liz, and family!

Just before leaving the hospital, we were able to meet with Kaelyn's oncologist again.  She was able to better explain to us the few results she knew of the pathology that was done in Salt Lake.  I explained it a little bit before in a previous post, but I understand it a little better now so I will try agian!  We were told that the majority of the cells found in the biopsy were identified as Wilm's tumor.  There were some other cells, though, that were not as they expected.  They believe these cells were teratoid cells.  Teratoid cells are immature cells that can become any other cell.  So, Kaelyn's pathology results showed what looked like bowel tissue where there should have only been kidney tissue.  Primary's sent the specimen on to another pathologist in Houston to verify what they saw.  If these truly are teratoid cells, that would mean Kaelyn's diagnosis would be Teratoid Wilm's tumor.  This is still a very treatable cancer.  The only problem is that it is VERY rare.  The oncologist did some research and was only able to find that there were only about 80 documented cases ever, with only about 25 of them being studied.  The majority of these cases turned out fine, just as a regular Wilm's tumor would with treatment.  The only downside is that there is just such little experience with this type of cancer, and they don't know exactly what to expect, like they would with a typical Wilm's tumor.  So, the plan now is to wait until next week when the pathology report is finished in Houston.  If it comes back as teratoid we may end up having to do chemotherapy in Utah.  There is still a lot that is up in the air, but when I know I will update!  I still feel really good about things.  Kaelyn has proven to be such a trooper.

Keep those prayers coming!  Thanks to everyone for your love and support.  Hopefully I'll have more updates sooner than later.

Champion

Last night Kaelyn's grandpa Ernie spent the night in her hospital room with her again since he has not been able to be here because of work and church things.  Brock and I were able to get a solid 5 hours of sleep in the hotel, which is better than interrupted, uncomfortable sleep at the hospital!

I was really nervous to leave Kaelyn with my dad last night because she had not successfully taken any pain medication since the epidural was removed and seemed to be in quite a bit of pain unless she remained completely still.  She ended up falling asleep pretty close to 11.  That's when we headed for the hotel and left my dad to fend for himself.  When we returned this morning we found out she had woken up twice in the night while they were doing her vital signs.  Both times she cried for a couple of minutes but went right back to sleep.  The rest of today has been pretty great.  She is in some pain, but she handles it really well.  I guess she will not be taking any pain medicine since she refuses, but I'm okay with that as long as she can handle it. This just confirms my beliefs of her always being a tough girl!

 Again, the doctors have been very impressed with her handling the pain, her eating and drinking, and her walking around and playing.  She is our little champ.  Our goal was to be discharged today and to have her pain in control enough to be able to visit the zoo.  Mission accomplished!  They are currently in the process of discharging her and we are planning to hit up the zoo tonight.  I am completely amazed about how things have gone.  I was so worried last night because I was convinced she would refuse to take her medicine, no matter how bad the pain got.  I never even thought of the possibility of her being able to handle the pain without medication. 

 

 We're gonna miss this hair!

It looks like we will be hanging out in Morgan over the weekend until we think Kaelyn is healed enough to make the long drive back to Billings.  The oncologist here is pretty sure we can take care of all her treatment in Billings.  If that is the case we will probably head back early next week.

Visits from Isaac

The next preparations are for chemotherapy.  It makes me sick reading about the precautions I have to take for myself and my family because the medication is in Kaelyn's system!  Things like handling her soiled laundry with gloves, washing the laundry twice, and avoiding all of her body fluids.  It is disturbing that we will be filling her body with such things, but it is really our only option, and we know that everything will be OK.  Many have been through it before and have been OK.  I am confident there will be a much safer remedy in the future, but we have to deal with this now, and this is how to deal with it!

We're looking forward to our last week or so until chemo.  Hopefully we can squeeze in some fun activities!