Still a Princess

Just a couple of months before her diagnosis, Matti was hired by Party Ever After to go to parties as a Disney princess.  This place is such a class act.  And the little girls love, love, LOVE having the princesses come to their birthday parties.

And, being completely objective, Matti does such an awesome job at it.  Whether she is Elsa, Cinderella, Rapunzel - whoever. (I don't have a picture of her as Cinderella, so you will have to trust me.)

I will let you tell her which is her favorite, if you don't already know.

Yesterday morning, she had her latest chemo push.  After last weekend's scare, we are back to feeling okay, but with a dash (or maybe a heaping tablespoon) of increased gratitude for the blessings we have received in her treatment and prognosis.

We did her push in the morning, though, this week because she wanted to get plenty of rest for today.

Since she started chemo, she hasn't taken on any princess party opportunities because she didn't want to have her employers counting on her for a party and then end up not being able to fulfill the obligation because of physical constraints.  It's one thing to just randomly get sick the day before - or even the day of - a gig.  It's quite another knowing the likelihood of that happening is extremely high.

Well, last week, her employer called her with an opportunity for today.  And there was no way Matti wanted to miss it. Some may call it a payment forward.

A little 4-year-old girl (I'll call her Sadie) who has finished her chemo treatments for kidney cancer this past year wanted, as part of her wish granted by Make-A-Wish of Southern Nevada, to have Rapunzel visit her home one-on-one.  She wanted Rapunzel, in part, because this little girl had lost all of her hair during chemo and loved Rapunzel's beautiful, long hair.

So, for 30 minutes, Sadie got to have her own private meeting with Rapunzel.  They sang.  They played games.  They played with her toys.  Near the end, Rapunzel got to tell Sadie that she gets to go to Disney World tomorrow!! They talked about how wonderful her trip to Disney World will be. Rapunzel told her how she would love to go there some day.

Sadie said, "My tummy just wants to tell you thank you!"

The Make-A-Wish crew enjoys tea with Sadie and Rapunzel.

During that time, Nicki (who went because obviously Matti can't drive herself there) was talking to Sadie's parents about their daughter and disclosed to them Matti's situation.  Between the parents and the Make-A-Wish coordinators and me, there wasn't a dry eye.

Okay, I wasn't there, but that's what Nicki said.  And I may, or may not be fighting back tears at this very moment.  And I may, or may not, have shed tears thinking about this the past couple of days.  I can neither confirm nor deny such phenomena.

Sadie's mother told Nicki that she would like Matti to tell Sadie about her cancer.  So she did - as Rapunzel.  And the beauty of it is this little princess still believed she was talking to Rapunzel.  She told Rapunzel that her doctors helped make her better and they even took out her port.  "Do you still have your port?"

And Rapunzel showed Sadie where her port still is, to which this sweet little girl said, "Don't worry, my doctors can take it out."  And, "It will be okay. You can get better." By all accounts, it was a very sweet exchange of words and love.

At last, when it was time to leave, Sadie gave Rapunzel the biggest hug ever and told her, "I love you!"

Deep Breaths

I was just thinking on Friday that we really were so blessed. Things are going okay with the treatments. Matti is handling them all like a champ.

We had some fun family time the past few days.

On Saturday previous, the only thing I really wanted for Father's Day was to go to "Jurassic World" with the whole family. Sure, I had some reservation about the younger ones, but part of the entertainment was watching their faces as they saw the dinosaurs rage on the screen. We didn't even need the extra underpants we brought for them.  This scene is very typical of me and the youngest 3 boys:

Then, on Wednesday we were treated to an outing to see "Inside Out" courtesy of Candlelighters.  I have mentioned it before, but I believe they are a charity worthy of your donation dollars, if you are so inclined.


On Thursday night, we spent the evening at Spring Mountain Ranch with friends to see "Chitty Chitty Bang Bang." A good time was had by all. Matti's friends are represented by toes and knees in the picture below. Another group of friends is behind the camera.

So, back to Friday...I am thinking everything is great - considering.  I was going to write in this blog about it and how there is a part of me just waiting for the other shoe to drop.

Then Nicki calls to tell me she is taking Matti to the ER.

Matti's right eye was completely dilated and nonreactive to light. The left eye was fine. Nicki called the doctor and was told to take her down to Sunrise.

They did a CT and some other tests and decided to admit her and keep her overnight because the eye wasn't any better a few hours later and...they saw an "abnormality" on the top of the brain.

WTF? Is that like a Brain Cloud? WHAT!? What does that mean?

They had no answers.  Just that they would do an MRI in the morning and be able to have a better look.  Plus, they would compare these to her scans she had in April.

Needless to say Matti was freaking out.  She was already having to worry about just having cancer.  Now she has an "abnormality" on her brain CT. Her Grandpa (my Dad) died less than two years ago from brain cancer. Her uncle (Nicki's uncle Lyman) just a year before that of the same brain cancer. Her Uncle Mike (Nicki's uncle) just 7 years before that of the same brain cancer.

Nicki had the herculean job of trying to keep her calm and distracted through the night while being freaked out herself.  And I had the job of going home and not losing it in front of the other kids.

Why? Why does that even have to be a thing? Why? I will not admit that I totally lost it and sobbed like a baby in the shower on Saturday morning when nobody could be watching.

Not too long after, Nicki called with the results of the MRI. The "abnormality" was not there. It could have been a fly buzzing around, or Matti moved slightly during the scan, or some mysterious smoke monster moving through the room. Who knows? But everything looks great.

As for the eye?  Matti wears a patch behind her ear to help with nausea from the chemo.  The doctor's hypothesis is that Matti touched the patch and then rubbed her eye.  The medication in the patch could cause the muscles in the eye to relax and the pupils dilate.

We aren't going to test the hypothesis. But we are grateful there is no more brain cloud.

Magic? Or Just Family?

You decide.  It's probably some mixture of both, though.

One of the first rides of the first day, she was ready to enjoy some spinning.

These next few were later that night watching the new Main Street Electrical Parade.  It was just the right mix of the classic with some fantastic updating.  And you can see that Matti enjoyed it from her royal chariot.

This is only here because it's my favorite decoration at Radiator Springs.

Waiting to see our favorite princess who swims under the sea.

This scene also brought a smile to her face as we waited for World of Color - Celebrate! (It was good, actually.)

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She loves King Arthur's Carousel.  Note, in the background, that Cassidy does not.

 Her favorite place to sit for Big Thunder Mountain is in the last row of the last car.  You can see the family was able to dominate the second half of the train, with Matti in her favorite place back there.

I have pictures from the beach, too, but they are on the camera and not my phone.  Who uses cameras anymore?  I do, I guess.  I didn't want to get my phone out at the beach.  Figure out the logic.

Alas, Monday was all real again.  She had the start of a round in SLC.  By now, a pro.  It's not that it is easy, but we know what to expect, with the hope she won't be encountering anything new.

They kept her medicated properly so she wasn't more uncomfortable than usual or she needed to be.  And on Thursday night, she and Nicki were flying home.

Only not.  The flight was delayed, they found after they dropped off the car and went to check in.  They wouldn't be able to get on another flight until that one arrived well after midnight.  Nicki explained to them why that was not acceptable and they scheduled them on one of the first flights in the morning.  They went back to Grandma's house to sleep comfortably.

There are some additional developments that we are having to discuss, think on and pray about.  Matti, especially.  It's an interesting place to be having my daughter be in a position to have input into her medical treatment.  We are so used to making all the decisions, but, while she is still a child, she is old enough to be involved in those decisions.

Don't get me wrong, the prognosis is still very positive, it's just some choices about the treatment path from here.

We appreciate your prayers, your thoughts, your desires to help.  Please don't stop.  As things come up, those of you who are in the right place at the right time will be called on for your help.  And words cannot do justice to the gratitude we feel for you when you do.

Matti has had some awesome young women do some really great things for her.  Here's one example: Shoes.  The friend didn't ask.  She decorates these shoes and sells them and decided to do this on her own.  (Disclaimer:  I am not doing this soliciting sales, just sharing the sweet gesture.  I hope that is clear.  I had second thoughts after I started to type this, but I am going to leave it, anyway, second thoughts or no.)

Matti is home now and ready to rest for the weekend before her next chemo push on Monday here in town.

A Reprieve...of Sorts

Of the many interruptions to her life now anticipated upon receiving the cancer diagnosis, one awful one was that she would not be able to go to the 5SOS concert that she got tickets to for Christmas.  That's 5 Seconds of Summer.  Some band that girls love.  Aife and Luke and Biff and Tom or something like that.  Maybe it's Danny, Donny, Jonathan, Jordan and Joey

The timing would now likely be in the middle of radiation treatments.  So, the ticket remains pinned to her board in her room to mock her with the injustice.

Another, even more devastating, interruption was a planned trip to a magical land.  A happy place.  Some might say it's the happiest on Earth.  A trip planned for multiple annular cycles.

Obviously, we wanted to do anything we could to preserve that for her - as well as for the rest of our kids.  And let's face it, for mom & dad, too.  So the subject has been touched on several times with the doctors.  The timing was such that her normal major treatment in Salt Lake City would have fallen on this past Friday.  "The next round."

But, knowing what this meant to Matti - and her family - the doctors consulted and decided that she would be okay to rest a week and a half between treatments so she could go.  And tonight, it is clear it will happen.  She is so looking forward to this.

A reprieve.

A week of happy.  Only focusing on happy.  And maybe even Doc or Dopey.

And really, we are all really looking forward to it.  She had another blood lab done on Friday and her counts were strong - a very good indication going into this week away.  The Monday after we get back, it's back to life.  Back to reality.

But for one week, it's all about escape. Adventure and fantasy.  Frontier and tomorrow. Dreams and wishes.  Diamond celebrations, if you will.

Finishing Junior Year

We definitely have a lot a thanks going out to the teachers and administrators at LVA.  They have been so good to work with in helping Matti complete her classes.

No, she is not getting the best grades she has ever had, but she is getting to finish and receive credit.  And considering how much time she has missed, that's a big deal.  She was really worried about it at first.  But the teachers have let her complete assignments on her time and get them in when she can so she can pass the classes. There is currently one glaring exception, who shall remain sin nombre for now.  We are hoping there is still something that can be worked out.

And this week is finals week.  On the plus side, that means half days most of the week.  On the not-plus side, it's finals week.

She had another treatment on Friday.

This weekend, she had a visit from her best friend who moved to Phoenix last summer.  She graduated the week previous, and so she flew up this weekend to spend some time with Matti.  Like last week, with her cousins, the presence of a dear friend provided a great distraction for her the night of and day following the treatment.

In fact, she actually came to the clinic to support Matti.  And I think the extra support helped because there was some difficulty this week with her port not allowing blood return (which is required for the chemo push - as well as making blood samples easier to take).  The line would let saline pushes in, but wouldn't let anything out.

That meant a longer wait, as they pushed some TPA (stands for Temporary Patience Annihilation), to help break up the clotting that prevented the return.  For those who are wondering, it actually stands for Tissue Plasminogen Activator, but I like the first one better.

As we left the clinic, they let Maggie have a do-rag so that Matti & Maggie could match for the weekend (well, not in colors, of course, as you can see, but in style - with a capital S.)

Working backwards, still, to Thursday, it was Matti's final Choir concert of the year.  Of all the things she was concerned about missing out on because of this cancer fight, this was one of the biggest.  She really worked hard to be to school every day last week.

She made sure she had the music down, as well as the dance.  (Dance, you say?  I thought you said this was a choir concert.)  Yeah, I did.  It would more appropriately be called a Production starring the Choirs.

And it was.  Matti had so much fun.  And, naturally, she was wonderful on stage, where she loves to be. So here are a couple of brief snippets from the show.  (Enjoy the high-quality filming technique) You will note that she took the opportunity to wear her wig.

So, yeah, she was tired that night.  Frankly, it is likely that all this activity contributed to the port troubles.  Being properly hydrated, and just worn out.

Next up...a reprieve from treatment for 2 weeks.