Update: Port Problem Solved (sigh of relief)

Before I get to the meat of my post I wanted to remind myself why I blog. Probably so I'll do it more.

I've said before that I like to write for selfish reasons. It's for me. It clears my head and helps me organize my thoughts. After a good blogging session I feel like I've just been to counseling. Weird, maybe (probably) but it is effective and cheep! 

I also blog for my children. While my oldest son will probably have his own memories of what we went through, the other three are probably too young to remember any details. Even if they all remember, I want them to know what is in my heart and mind. That it was sucky and hard, but we did it, together. As a family we pulled together, held on to our faith, and ran with it!

PS...I must run too slowly. That's why I have a husband like Jess by my side to carry me through. Sometimes literally. 

OK. Here's an update.

In not knowing what to expect from yesterday's treatment, I am pleasantly surprised. Yay!

I feel sick, yes. I gag when I get up to walk, but the nausea seems to be under pretty good control when I lay/sit down. Fun. They do pre-medicate me with nausea meds, but I've only had to take 1 pill at home. My head feels "full"...if that makes sense. Not quite a headache, but it definitely not normal. My stomach is hurting so I really have no appetite yet this morning, but I'm drinking a lot. Juices from my juicer and lemon water, regular water makes me gag. Otherwise I am in great spirits, I can manage my kids (don't tell, but they mostly manage themselves), and so far I can tend to myself and the things I need...gagging isn't fun, but sometimes,unfortunately, necessary.

So far so good. Now with yesterday being my first treatment I wanted it to go as flawlessly as possible...of course! 

Well, I have this port under my skin right under my right collar bone. It is usually super convenient from blood draws, to infusions for treatment and even for contrast for scans. Yesterday was different.

The needle that is used is about as thick as a tack, but longer. It is kind if intimidating. I try not to make "eye contact" with it...it might see my fear! Hehe, just kidding, but I really try to never look at it. This is an illustration of how it works, and that is the exact port model that I have.

Well what they forgot to draw was nerves. The surface of the skin has many nerves. Nerves that can cause a lot of drama on my first day at Mayo!!!

I was accessed like normal. Sterile everything, both the nurse and I wear a mask, clean the area, then stab!

This is always a definite poke, but the feeling in the area goes away in about 20-30 seconds. I have had this needle in my chest for a whole week and it is barely a bother. Why does the feeling go away? I'm not entirely sure. I've always assumed that not many nerve endings are in between the thin layer of skin and my port. 

This time was different. "Ouch!" I cried out. It hurt a lot more than normal. Tears started to well up in my eyes and the overflow ran down my cheeks. My nurse, very concerned, asked me if that had happened before. Nope! My poor nurse did nothing wrong, she accesses hundreds of ports...why does my body always like to be in the 3% of things that people don't see often?!? 

Before I knew it I had 3, sometimes 4 nurses around me, asking me questions, examining the needle insertion, blood return and the skin around my port. I knew they had to figure out what was wrong...I wanted them to figure it out...but the more they touched the area the more it hurt. I tried my best to be cooperative and grateful for so much help, while tears ran down my cheeks. 

I learned quickly that a port that hurts isn't a good sign. They started to prep me to get treatment that day through a vein in my arm, and to have some sort of study done on my port to ensure that it is safe to use. You don't want chemo drugs getting anywhere they aren't supposed to.

They also paged my new Dr to come over and check me out. While he agreed with everything they were doing, he suggested trying one more thing. Re-accessing me. He said a nerve may have been hit. Although the sound of that was more pain, it was my best, most simple option. 

My skin around the port now felt raw and sunburned. Every time saline was pushed into it I winced in pain. So she removed the needle. AHHHH! It hurt, but at the same time, I felt relief. After a period of resting and re-cleaning the area (ouch) we tried again. 

This time I pulled the skin taught over the port to change where the big ol' needle went into my skin. Better!

The same nurse did the same thing, but with that minor adjustment to my skin, I already knew that Dr Reeder was right. We had hit a nerve. Hit it on the bullseye apparently. And this nerve was angry at us for disturbing him!

About an hour into my 4 hour treatment I could touch the port needle, the skin around it and move my arm without discomfort. I was so relieved...as was my poor nurse. But bless her heart for getting me the help I needed!

The rest of my treatment went flawlessly as it could and a few hours later Kerry was driving us home from Scottsdale. 

Whew! I did it! I knew I could of course, but with that extra challenge with the port needle hitting a nerve thrown in there, I had to admit I was feeling pretty proud of myself for hanging in there and toughing it out.

Well, I am going in today and tomorrow to do the same treatment. Good news is she left me accessed so I didn't have to risk that happening again. That's how much you shouldn't feel the needle...I slept just fine with it in, and I toss and turn a bunch.

Day two is going to be a breeze compared to yesterday...right?!? ;)

Right!

Our Miracle Vacation to Disneyland

   

We were waiting for some great results from my last PET scan so that we could celebrate with a trip to Disneyland. We were just so sure it would be good results...even my Dr was surprised when it wasn't. 

The mass in my chest more than doubled in size. It was 0.9 cm, now it is 2.3 cm. The disappointment of enduring through 2 months of chemo and having it do no good is almost unspeakable. There was an amazing donation campaign going to help us get there and when we got the not-so-good news I was worried that it would all be in vain. How was I going to break the news to my kids?!? 

Devastating. 

 Well the Disneyland trip donations came pouring in. Some small and humble, others overwhelmingly generous. All given with so much care and concern for us. Even after our disappointing news, people filled our Disneyland fund with their love. 

The only solution my husband and I could come up with was to go...now! We got scan results on Thursday, we left on Friday night. We had to go before the next round of chemo started, or else we'd have to wait a while until I was strong enough to go again, and we didn't know when that would be.

Seeing the faces of my kids when we told them that we were still going, and that we were leaving the next day was priceless. Unforgettable. Their screams and squeals, the jumping up and down...it was pure excitement. The kind of excitement only a child can produce...times 4 kids. 

Yay!!! 

Disneyland here we come! No time to even think about what the future holds. I need to pack!!!

Me right before my scan. My hopeful face, lol. :)

The WHOLE trip was arranged for us and paid for by many amazing people. Isn't that mind boggling?!?? We couldn't have done it by ourselves, not now...and definitely not as nice of a trip! Thank you. From the bottom of my heart and the depths of my soul, thank you all.

Here is the only way I can think to show just a fraction of my gratitude. Here is the story of our trip, and lots and lots of pictures. Enjoy it...we did!

Friday:

At the last minute we had an amazing donation of an airplane flight to CA...all of us! We were just going to drive, we do it often enough with all of our family over there, but flying was a real treat! It was Lily's first time ever on a plane and Joey and Drew's first time that they remember (they were little) they loved it.

Airport fun. Andrew on the far left...haha!

Lily, Joey and I

Jess and I 

Boarded!!!

Andrew, Jess and Matthew

After arriving in CA we rented a van and we were off! First stop was my parents house where we stayed for a few days while we visited with them and Jess' parents. We couldn't come to CA without seeing our folks! We had some nice family time on Friday and Saturday. Family first!

Sunday:

After a very nice, and much needed visit, we made our way to our hotel room in Anaheim at about 3pm for check-in. What a nice place!!! It had a king size bed in one room with a big couch, a little kitchen area, and 2 full size beds in a connecting room with a bathroom and a small second fridge. It was perfect and fit all of us very well. We felt so spoiled!

Just me unpacking

Boys doing what they do best...raiding the fridge. ;)

 The first thing the kids wanted to do was swim...it is February crazy kids! To let them get it out of their system we just went ahead and ok'd them to go ahead and do it. Turns out that the pool was heated and they had a very nice little dip...despite the fact that it was 56 degrees! I'm glad they didn't freeze.

Our room was on the third floor and the pool was on the fourth. Kids thought that was awesome.

Although the pool was warm, the hot tub was warmer!

Cute faces

Our hotel "The Camelot" across the street from the park. Perfect location.

Once the kids got cleaned up we had some dinner then hit Downtown Disney. I hadn't been there in years and I knew the kids would like it. Kind of like a Disneyland warm-up. We bought the kids some Disney clothes before the trip and surprised them with it! A money saving idea that worked out perfectly. 

Kids on the balcony of our hotel

Walking to Downtown Disney

The Lego store

We had never tried funnel cake or German crepes before...we had to live a little!

True love (aww...so cheesy)

Monday:

Here we go! After our night at Downtown Disney I was pretty worried about my stamina. I hated to admit it (stubborn), but I needed help, so we rented a scooter. You know, the grandma kind that you ride around. Hehe...just kidding, but I wanted to be sure that I could last the whole time. 3 days is a lot of time at Disneyland! The company was great and delivered the scooter to our hotel lobby. Then we were set to go!

Waiting for the scooter to come

We're in!!!

We got inside the park and who do we see first? Minnie Mouse!!! Lily's favorite! One thing that Lily couldn't get enough of was hugs from the characters. In the past she has been very scared of the Chick-fil-a cow that has been at a few of our fundraisers, like can't be in the same room without crying, scared. I was quite nervous about how she'd be. But as you can see, she couldn't get enough of them. I was so glad that we didn't have to spend our trip avoiding the characters. Whew!

Lily getting her first, of many, character hugs

Minnie complimenting L on her polka dots

Pluto showing off for us

Another amazing perk of our first day was that we had a professional tour guide with us! Robin knew me from a few community theater productions that my family and I were a part of when I was younger, and she offered her services for the day! Awesome!!! It was so nice to have someone with us who knew not only the park, but how to optimize our time and energy. She really set us up for a super successful trip. She gave us her inside tips and her own personal time so my family could have a nice time. Thank you so, so much Robin!!!

The crew 

Us with Robin getting ready to tackle our day

Famous castle

On Dumbo

Jess and Andrew

He tried and tried, but never got it to budge, dang!

At Snow Whites Castle

Pinocchio

Pinocchio

About to be swallowed by Monstro the whale

Autotopia driving fun

Kids showing off their colored tongues from the suckers that Robin gave them in line for Pirates of the Caribbean

Jungle Tours

Listening to the Jungle Tour corny jokes

Lily and I met Genie when we were separated from the boys for a bit. Lily was so excited...I thought he was kind of creepy, lol!

 One thing that Disney never disappoints with is their parades. It was phenomenal and so much fun!!! The kids faces just lit up with every float, and Lily waved so cutely and with so much enthusiasm to almost every character. Beautiful costumes, awesome performers and an all around fun night. It was a magical way to end our first day for sure.

Amazing drumline

Dancing princesses

Lion King

Tuesday:

We had the opportunity to make reservations at the Storyteller Cafe. It was a wonderful breakfast buffet experience with a number of fun to meet characters walking around. We really had a good time there, and the food was delicious!

Jess showing off his yummy food

With Dale

with "Terk" from Tarzan (I had to look him up)

Mickey waffle

Looking at the map to California Adventure and planning our day

They participated in a parade around the restaurant with Koda and earned these pins! 

Koda from Brother Bear

Matt and Lily. She is sneaking in another big fuzzy hug from Chip!

The boys look like twins, haha!

Once we had our bellies filled we were off to California Adventures!!! It was the first time for all of us, so since none if us had been there before, it was an extra special "first" we could share together.

 First stop, CARS land. It was so cute and so much fun to feel like we were in the movie. It ended up being one of their favorite "lands".

Andrew being a ham like usual

Boys waiting for the girls at a bathroom break. Girls take too long.

Tons to see and so much to do! We saw Minnie singing and dancing, the kids rode a zip-line and did some rock climbing and did an obstacle course. Fun stuff! Big smiles and lots of laughing!

Smily Joey

Matt being an awesome big brother, like usual.

In the above pictures Lily looks so smiley, but she actually had a fever. We were able to control it so she could have some attempt at a nice day, but in the pic below you can tell she doesn't feel well, but is being a real trooper. She is an awesome little girl. So proud of her. One of her favorite rides was Mickey's Fun Wheel. It brought out the giggles in her. I love the video that Jess made. VERY FUNNY!!!

Sick baby girl

Cool pic of  Mickey's Fun Wheel

View from inside the ride

Looks on their faces, love it!

Once we were done there, we explored the rest of CA Adventures. Rides and trolly's with singing characters on them made it so we always had something fun to see and do! It's like being in a Disney movie!

Lily waving to Mickey int the trolly with singing characters from the Newsies on it
(kids didn't know who they were).

Great view of the park. (I'm in the bottom left corner)

Sully

Lily sneaking in another big fuzzy hug, hehe. :)

You can't tell from the pic, but Lightning McQueen was driving down the street!

The CARS ride was one of our favorite rides, so we went on a second time and bought the pic. Can't see Andrew well, but Lily looks adorable with her little arms up. :)

I think Drew was bored on this one, lol.

Sick girl smiling!

My "big boys"

Lily excited to drive

This would be a perfect pic if Drew wasn't pulling a face...oh well, he just can't help himself. 

To get Lily through the day I had her ride on the scooter with me instead of walking around. Well, around dinner time, the day finally caught up with her and she fell asleep. Sweet baby. It was cold and her loving daddy gave up his warm hoodie so she could have a blanket. He was a little cold, and it was definitely a challenge for me to hold a sleeping 5 year old on that scooter and drive it, but she needed us, and we were glad to do whatever we could to make her comfortable.

Jess found us a great place to watch the World of Color show and me and my sleeping princess stayed there for about an hour to hold the spot while him and the boys went to ride California Screamin' again.  That was one of the favorites for sure! They came back to us with hot chocolate and we waited for the show to start. The park looked so pretty all lit up.

World of Color show

Wednesday:

Our last and final day. In the hotel there was a bit of drama. Although Lily's fever seemed to have broken, I was sick. Really sick...and so was Joey. His fever seemed to be controlled a little by a fever reducer, but mine wasn't. I don't exactly have the greatest immune system right now. The family was dressed and ready to go. I was still in bed. I didn't want to stay in the hotel by myself, but I didn't really see any other way. I didn't want to risk having to be hospitalized because I didn't give my body a chance to get well. 

I was praying. A lot. What should I do? If I didn't go, the kids wouldn't be able to use my special "Guest Assistance" pass to get to the front of the lines and they might not be able to do as much. It wouldn't be the experience they were used to from the past 2 days.

I had a feeling of peace come over me. As I thought about going I just felt that if I went, I might not feel good, but everything would be ok. I decided to give it a try and tough it out. I got dressed and ready in like 5 minutes and I knew that Joey was being tough too. He still didn't feel good. And Lily had to wear the same shirt that she did the day before because she threw up on her other one. Sigh...here we go...giving it our best shot!

The three of us got blessings of comfort and strength from our wonderful, worthy priesthood holder, and we were on our way. Putting on a smile as often as we could.

We found Goofy!

We loved the new Star Tours in 3D from the day before, so we went on it again, then for nostalgic reasons for me, we watched the Captain Eo show. Yes, I love all things Michael Jackson. :)

One of the reasons I felt I could to this day was that my mom was going to come and be with us to help...and what a huge help she was!

Waiting at Captain Eo with Grandma

We saw a big line and found out that it was to meet Tinkerbell...Lily had to meet her! Although my pass did us no good in cutting down the wait time, she waited in line with her Grandma for 45 minutes (the longest she waited for anything) just to meet her. 

Jess did take the boys to go ride a ride or two while she waited. 

Fairies Welcome!

Robin (tour guide) had told us the first day that there are hidden Mickey's all around the park. There really are and we have had fun trying to find them! Andrew was pretty proud to have found this one! 

Look carefully, do you see Mickey?

My little fairy girl

Lily with Tink and Terrance

Even the boys got in on the fun!

We met the Mad Hatter too! Lily didn't want a pic with him, lol!

After going on a few ride repeats (Soaring over California was awesome) Lily had to go on the rockets and finally got the chance to!

Drew

Matt and Joe

Flying high! There's Lily and Grandma!

We did a lot on the third day, but somehow the pictures are lacking. We just didn't take as many pictures. Bummer, but we did both Disneyland and California Adventures. Kind of like we just hit the rides that we had already done that they wanted to do again before we had to leave. 

By the end of the day Joey was pretty lethargic, but I was doing fairly well. He wanted to sleep, and I didn't think I could go through another night holding a sleeping kid on the scooter, so I walked while Jess rode and held our sick Joey.

Waiting in line at the CARS ride for a third time. (Jess and Joe are on the scooter)

Although we didn't buy this one, I had to take a picture of the screen. My mom looks so cute covering her eyes on the way down and Matt is wearing his newly acquired Mickey hands making peace signs. Lily has her little hands up again, but my arm is covering her face. And yes, I am wearing Lily's red minnie gloves. She didn't want them and I had given mine to my sick Joey. Jess and Joey did go on this ride together on the car after us even though he was sleeping just a few minutes before.

Sorry mom...it is just a great shot! 

We parted ways with my mom at the end of the day and went back to our hotel. What a miracle of a trip in so many ways! 

The fact that we were able to come in the first place, then to have so many of us so sick that it could've ruined things. Crazy how life is sometimes. So amazing filled with special experiences and creating great memories, yet still throwing us a curve ball for us to overcome. The great thing about challenges is that after you overcome them you can look back and know that with the support of the ones you love, great friends and a loving God, you did it! That's how we feel.

So grateful and blessed!

The next morning we packed up and headed out. Our flight wasn't until later in the afternoon so we went to see my Grandma and Grandpa for a lunch visit. I failed at taking pictures of us together (boo), but it was a truly perfect way to end a great experience...with more family time.

This trip will be talked about for a long time. We couldn't have done it without you. Your love and support and most of all, your generosity. Thank you.

May God bless you all.