A Month Without Chemo

Yes! It's been a month. And life has been blissfully wonderful and everything is back to normal. The End.

Except, that's not the way it really works. True, she hasn't had more toxic radioactive fluids pumped into her body. But it's still caused nausea for a couple of weeks. And she is still experiencing pain and fatigue.

What has she been up to the past month with all this going on?

Well, her first follow-up the next week to get her blood levels checked, she was given a special gift, courtesy of Caps for Kids. The same organization that sent the young man a hat signed by Mark Ruffalo sent Matti this hat:



That is from Chris Pratt, currently one of Matti's favorite actors. No, she doesn't wear it. It sits on display in her room.

Then, on the next Saturday, we had some good family time at dinner:

And, thanks to a good friend, a show to celebrate Matti being done with chemotherapy.(And maybe it was my birthday, too):

The following week (the one full week of school in November), Matti had the LVA Smith Center performance. Preparing for these shows takes a LOT out of her, as well as the performance. However, it's these opportunities to sing and perform that bring her so much happiness amid that crap she has been having to endure. Here's a shot of her in the choir, just before the performed "Come Thou Fount" arranged by Mack Wilberg:

The following week was the Vocal Jazz Concert:

And this one just wore her out. She was completely exhausted and in pain the next day. Thankfully, her teachers have been so understanding of her needing these moments and working with her missing schools so she can perform in the concerts. She has been working on making up all her work for the past couple of weeks.

The weekend was restful in Enterprise with family over Thanksgiving, for sure. But, on Sunday, Nicki took her north to Salt Lake, while I drove south to home (we split the boys evenly, 2 & 2)

In Salt Lake, she had appointments with Dr. Wright and all the scans, CT, PET, MRI. The scans came back - "pristine" was the word they used.

Talk about Thanksgiving. Then, Primary Childrens did their thing for kids who are done with treatments. A song and dance, some gifts and the bell. I wish I could have been there. Just thinking about it, though, definitely does not make me cry.

AND...this:



No, she doesn't get to keep it as a memento, since...radiation and toxicity. But it's out now.

Yesterday, as part of the LVA Choir Department's All Nations activity, Matti got permission for she and her friend Rachel (also LVA student who works for Party Ever After) to entertain as Elsa and Anna. Needless to say, she was in her element as little girls flocked to her wherever she went to have their picture taken with Elsa:

That's all she's been doing the last month.

Turning the Page

When you are reading a book that is really horrific, you can always put it down. Of course, this book in Matti's life has become required reading. So, we are just grateful that she can turn that page and see what is next.

She has hope. We have hope. There is definitely cause for optimism.

As for myself, particularly given the last 3 years we've had and the fact that I am an accountant, I can only allow myself to be cautiously optimistic.

How to note this special occasion for our family? Well, the night before, we had a family night in. Matti had been asking for salmon and mashed potatoes, so that was the meal and we just enjoyed time at home - no practices, no rehearsals, no scouts.

The next day, during Matti's last class of the day, which is Academy Singers, Nicki had a surprise party planned for her. Nicki had spent the previous several late nights putting together a slide show to give Matti's friends a glimpse of her journey so far.

Most of them were aware that it was to be her last chemo that day. But, they didn't know the last 20 minutes were set aside for this, thanks to the totally awesome Mrs. Franke.

This first picture is just to show the desktop of the computer being projected onto the screen, which got quite a reaction from the kids.

I seem to have this talent for catching people when their eyes are closed. I guess I am not destined for photography.

Nicki sets up the plan for the rest of the class and introduces the slideshow.

I'm not going to lie, there was not a shortage of wiping away tears.

I just like this because it shows how Nicki can command a classroom of teenagers. Me? I would just yell and throw things. 

The applause. Plus, I like how Matti is sneaking a glance at the camera.

 Then it was time to get Matti injected with toxins.

Everyone was so nice and Matti had to decide who she was going to give her last Winnie the Pooh to.

All the vitals and stuff.

We were brought back to her room and had the usual discussions about how Matti was doing and where we were at on her meds and everything else. Then Matti asked what kid they would think would be good for her to give her last stuffed animal.

They thought they had the perfect one in mind and they went to talk to him and his dad to make sure it would be okay.


They came back with the young man and his dad. He was supposed to have had some procedure, but an infection was going to postpone that and he was a little down about that and waiting for his room to be ready at Sunrise before they went across the street. But this boy had a great personality and attitude and presence.

He came in and talked to Matti and she gave him the Pooh Bear. After a few minutes, he paused and took off his hat and pulled out a card and gave it to Matti. "Here, you can have this."

I had noticed his hat, because there was some kind of autograph on the bill, it appeared, with the word "HULK" next to it. The card was to identify more clearly the autograph that was on the hat with a signature, or handwritten confirmation of the person - Mark Ruffalo.

Matti asked if he was sure he wanted her to have it and he insisted and then asked his dad if he could keep the Bear in his bed at the hospital tonight.

This sentence is a placeholder for me to link you to his FB page.

And for those of you wanting to see the slideshow Nicki put together, here it is:

Nicki and Matti left the appointment and went to St. George because last Christmas, grandparents bought tickets to see David Archuleta in concert this past weekend.

Matti really wanted to try to make it. She rested as good as she could Friday night and all day Saturday, but she was sick. Sick. Sick. She tried to get up and get ready and her body was having none of it.

So, they found a home for the four tickets and hour before the show. Nicki and Matti came home late Sunday evening.

But, Matti missed school Monday and Tuesday. She was so sick these last several days. She made it to school today, though. And we are hoping that after this weekend the sickness (nausea) will begin to wane.

She goes in tomorrow morning to have her blood drawn for cell counts.

Now, even though I want to add a couple of links and stuff, I am going to publish this because I want to give everyone an update.

The Final Countdown

That's right, just one day more.

The final chemo visit is tomorrow.

And no, then the fight isn't over and our worry gone. But, it will be the end of this chapter.

The next chapter is recovering from the injection of toxic chemicals over the past 6 months.

Another chapter is just about having scans (MRIs, CTs, etc.) every 3 months for the next 2 years. Every 6 months for 3 years after that. Then, annually for the rest of her life. Tests that we will no longer take for granted. So...there's that, too.

Make no mistake, we are very aware of the blessings that have gotten us to this point. Her road could have just as likely led down a different path than it has so far. Our expectation is that she has a LOT of life and living to look forward to. And I'm not sure how I can express that gratitude.

Physically speaking, she is pretty much always sick. She is definitely weak. (Although you would not always know it watching her.) Her body now has to rebuild and strengthen. Detox. Not to mention the narcotics she has been taking for months.

That is going to be a long road. And while we recognize that reality, we try really hard to not focus on it. Looking out at what lies ahead can be very overwhelming.

But, no more chemo is a huge thing. And we are going to celebrate tonight as a family. There will be revels.

Matti is coming down with a little bit of a cold, but as long as her blood counts are good, they should still be able to do the chemo tomorrow afternoon. We have tried so hard to make sure she didn't get sick these past few months and now the 20+ degree drop in one day was too much. **sigh**

During last week's penultimate visit, there was a little girl waiting with her brother who was playing "let's make faces" with Joy. It was very cute.

Then it was time for her brother to get called back...and he was not going to go. So, Matti made a present of the stuffed Tigger she had brought and he immediately settled down and went back with his Mom.

Magic. Pure magic.

No Time for Resting

Not when you are 17 years old with a determination to kick cancer's butt.

See, she had her chemo last Thursday, early in the morning. (She did find a little girl to share another stuffed animal with.) The reason she had it early in the morning was because we reasoned that all she had going on with CCSD Honor Choir and school functions, this would provide her with some time to rest before doing all that.

Was there, perhaps, some flaw in that thinking?

Well, she still was in a lot of pain the next day, but she was determined to do the things she had going on the next day, even if she was completely doped up on narcotics. It's not like she would be the only kid in school that day high on drugs, right?

What did she have going on?

This week was kind of "College Week" for choir. On Wednesday, she had the opportunity, with the choir to work with a Dr. Shankman (no, not Venkman) from NYU.

I didn't put a picture with Peter...I mean Ira - because this is Matti's blog, not his.

For Friday, to start, she had the Choir Senior Showcase. It's a day when many schools that like to recruit from LVA come to see who is graduating this year and watch them perform a little. This year there were 14 schools. If they like what they hear and see, the kids are invited to "call backs" later in the day, where they meet one-on-one with the representative from that school. Yeah, it's an audition - for college acceptance and head starts on scholarships.

And Matti was called back for 5 of the colleges represented - by 2 she really wanted to be, in particular. Would you like to know why? Watch these: (I had to make two files for each performance due to Blogger's file size limits)

Yes, by the way, it made me very nervous watching the video with her standing right on the edge of that 4 inch step.

One of her call backs.

Whether or not you recognize it, she is clearly affected by the chemo and the rest of the drugs. But she was still able to bring an outstanding performance. If you enjoyed those performances, imagine if she was not weakened from months of chemotherapy and narcotics and other crap in her system.

One would think she would be done, but, no. It's Friday, for crying out loud. And she only has 2 chemo sessions left. And it's Halloween season.

So that means...Halloween Party! With the Academy Singers!!

Ever since we saw "Inside Out" this summer, she wanted to be Joy for Halloween. And, thankfully, she had a friend in the choir who wanted to be a fellow character - Disgust. Check out these precious gems:

She is so intent on being her character, even through all she is currently feeling. (And, perhaps, the narcotics help.) But let's face it, she pretty much exudes the character she dressed as.

She crashed all day Saturday and Sunday.

But alas, on Monday, school beckoned, as did Honor Choir that night. Earlier last week, she had auditioned for the opportunity to audition for a solo in the concert. (Read that again, yes it says what it says.) I wish I had video of that, but she did awesome, of course. She was one of the five selected to be able to audition for the guest director (Dr. Copley from NAU). So, last night, she auditioned for Dr. Copley. I have the video for that, but because Matti doesn't love it, I am not posting it here. She was satisfied with what she was able to give, but she didn't love it.

Just a still of the line-up as she is getting ready to sing.

However, I will tell you, having watched the video and being the tough critic for such things that many know me to be, she did a great job. And while I didn't see the other 4 girls, I understand Dr. Copley's position in selecting the person for the solo. I don't think we look at it as cancer taking away the solo from Matti, because even with all that, she was still one of the top five selected for the opportunity.

Also, she completed the 1st quarter with a decent GPA, to boot. Because...Matti.

Two more. As in one more than one. In other words - 2.

The Best Laid Plans...

So, I had hoped to have pictures, as I mentioned previously, of Matti with Donny Osmond at the Danny Gans Memorial Run shindig that was on Saturday that raises money for the Nevada Childhood Cancer Foundation.

We didn't make it to either the run or to a movie featuring the one and only Ken Craig (and some other people). Sometimes, I wonder if it is even worth trying plan on anything right now. I think our choices are: 1) don't plan on anything and don't do anything; 2) plan stuff, but with no real expectation of ever doing it, so that if it doesn't happen there is no disappointment; or 3) become a LOT better at spontaneity.

Matti was feeling very sick from her last chemo visit on Thursday. I know she always feels like it's her fault that we don't do stuff. No amount of telling her otherwise helps, sometimes. It's been about the worst, so far. It wasn't until Sunday evening that she was starting to really get past it. I am hoping she is doing okay at school today. She is likely going to be overdoing it because there is a choir concert this week.

But she did give away another stuffed animal on Thursday. When she was brought back to the "staging area" (I don't know what else to call the area where she gets vitals all taken before going back to the room), there was a little girl who was very worked up about the blood pressure cuff, thermometer, etc. So, Matti took the gift to her and explained what she was doing to the little girl's mom and, basically, went into Princess Mode.

As the girl pulled out her new Tigger, she calmed right down and made it through the rest of the prodding, etc. The mom threw her arms around Matti saying, "Thank you so much!"

Again, no pictures, sorry. But, Nicki did post a couple of Matti's antics once in her own room. Here's the collage:

It's a busy week, this week and next, with choir concerts. But only 3 more treatments to go. AND no more combination days - each one left is only one chemo drug per visit.

THAT'S something we can plan on!!

And Then There Were Four

Treatments left, that is.

We just want her life back. She wants her life back.

She wants to be able to drive herself to and from school. She probably wouldn't even mind doing the dishes - at least once or twice, anyway.

She wants to be able to go out and do stuff with friends and be a normal high school Senior with all the activities and fun that should be happening this year.

Yes, we realize that it will still be a few weeks after her last chemotherapy before she will start feeling better, really. But to know that there are no more ahead will be an awesome feeling. Matti has started to actually count down the days and treatments.

We made a chain for her for that purpose. Each sibling put various thoughts - or pictures, which is, I suppose a representation of a thought - on each link. Of course, some of those pictures are battle scenes: airplanes dropping bombs on cancer; football team (BYU) beating cancer's football team (U of U, obviously); a stick figure of Matti kicking another stick figure (cancer) in the butt.

Anyway, it was fun to do that for one family home evening.

Also, Nicki's mom got 5 stuffed animals in gift bags for Matti to bring to each of her last treatments and to give to another kid having treatment on that day. It is an idea that Matti really loved and enjoyed helping to brighten little Janelle's day last week. We didn't take pictures. We are kind of sorry about that. But, I am sure you can imagine what the exchange was like. If you need help, then review this post.

So, two ways that can be pretty special in counting down the end to her treatments. After that, she gets to join the Long-Term Follow Up clinic - LTFU, they call it. I remarked to Matti early on that it's a good thing they don't have a short-term follow up clinic. Or, perhaps too bad they don't.

Last week, she felt a little more sick than we have been accustomed for her vincristine treatment. Frankly, some of that is probably due to other things happening in the home which added unnecessarily to her stress level. I won't waste any more space here on it, but you can read my other blog.

Matti will be doing Thursdays for the next 3 weeks and then, one more Friday. We have everything scheduled so she can have the best chance of getting to her concerts at school, as well as being able to participate in Clark County Honor Choir.

The cool thing about her participating in honor choir is that the conductor is the Director of Choral Studies at NAU, so Matti gets the opportunity to work with her and be in front of her. It's an opportunity to hopefully boost her resume for when it comes time to apply for scholarships.

Of course, she still has to complete her classes. And that takes homework that she doesn't always have the energy to get to. And if she misses classes, then she has to make up work...again using energy she often does not have. School is worrisome enough when your daughter doesn't have cancer.

This Saturday, we are going to take Matti to the Danny Gans Run for Life. If we get a picture with Donny, I will be sure to post it. Nevada Childhood Cancer Foundation is another fantastic organization that, I believe, is worthy of your charitable donation budget. They have been fantastic in helping us this past month. We really would have loved to had the kids participate in their Camp Cartwheel this past summer. Maybe next summer.

The Downhill Side NOT

So, we are definitely on the back end of this nightmare. We can see the end in sight (Last day of radiation is TODAY!! Last day of chemo is set for Nov. 6th). We can even count down the weeks on 2 hands. But, we can't really count all of the days of exhaustion, nausea, hair falling out (again, after it started to grow back) and just complete anxiety that Matti is still facing as she finishes up the end of chemo.

I start this way, because that is what Matti and I were specifically talking about yesterday. It was rough. We met with Dr. Wright (the best in the world) and she was helping plan out the rest of Matti's treatments, and how to weave them in and out of all of the things that Matti wants to do over the next 2 months. Matti started feeling slight anxiety...because she knows what to expect. It's not a surprise to her anymore, she knows what's coming and it is not fun. But, I know she can do it. She is so strong...literally. She does get frustrated, and anxious, and pissed, BUT she won't let this stop her. She has goals, and things she wants to do her senior year, and she is doing them.

1. She received the honor of being one of the Student Conductors at school. This is a big deal. She LOVES working with the choir, helping them learn music, learning from them, teaching them. She has such respect from the kids this year! It's so awesome to sit back and watch a group of high school students respect each other the way I get to witness when I watch them all working together.

Matti with the Academy Singers at Las Vegas Academy

2. She applied and got accepted into Northern Arizona University! This is so thrilling for Matti to have that overwhelming question of "where am I going to go to school" out of the way. This summer her AMAZING (Emily Meyer) voice teacher and AMAZING (Megan Franke) choir director got her all hooked up with the most AMAZING Director of Choral Studies (Dr. Edith Copley) at NAU. She is thrilled to have Matti, and Matti is thrilled to be there. She will audition for the Music program in a few months, but her future is heading in a great direction.

Matti, Emily Meyer and Dr. Edith Copley at NAU

3. She has some really awesome friends and family supporting her. She has had the opportunity to be a part of so many amazing things. Too many friends to mention, too many good things to share...but here are a few. She has been able to grant a little girl's Make a Wish. She has seen the power of prayer in her life. She has helped raise money for Candlelighters. She has made friends who are going through the same thing that she is. She has relied on the power of priesthood blessings. She has learned a lot about people. She has made her own "Make a Wish." It's overwhelming to think about all of the good things that have come into her life - and our family's life.

Mrs. Franke sent Matti some important
instructions that resulted in LOTS of
LAUGHTER!

Jordan surprised Matti this weekend!

Trey sending love from his Mission

4. She is somehow managing her senior year, despite everything. She is doing it. She goes to school every day (when we are in Vegas) and is doing the impossible every day. Her doctors are all amazed by her. She would have every reason in the world to stay in bed and do nothing. But that would be letting cancer win, and she won't do it.

My brother (Josh) and sister-in-law (Beth) are a part of an organization that is doing a fundraiser for Primary Children's Hospital. They are doing a short documentary on Matti and her experiences there. My brother asked Matti, "What does it mean to you to beat cancer?" After thinking about it for a minute, Matti said "I think that being cured of cancer is one thing. But, not letting cancer affect your family relationships, not letting cancer affect your friendships...not letting cancer take the things away from you that matter most...that is what it means to BEAT cancer."

And that's all that needs to be said about that. I love my family and all of you!!

Matti, Beth and Josh

Superheroes

A big thank you to all those who came out to support Matti at the Candlelighters Superhero 5k yesterday. And also to those who didn't make it, but sent your dollars to Candlelighters on behalf of Team Matti.

Once, at a Susan G. Komen Fun Run/Walk, I found myself looking around at all the people who were there with shirts and signs in support of family members and loved ones who were battling breast cancer - or had battled and won, or even lost. I became very full of emotion for what was going on there.

Imagine, then, if you will/can, how my emotions were full at all the other families who were going - or had gone - through what we are right now. Some had lost their child and were running in memory of them. And here we were, surrounded by people who we love and were showing their love for Matti and our family by taking part in this event.

It was so humbling and...just awesome to feel.

If you didn't know about it, we apologize. We learned later that those of us who were sharing the invitation made by the Team Captains were only sharing it with friends we had in common with the original poster. Some FB settings on the original post. Then many of those who participated came to our house to eat and relax a few minutes. I didn't take pictures of that. Sorry.

This morning, I drove Matti and Nicki to the airport to go to SLC for her radiation treatments. Only one week and then they will be back. I will let Nicki share the experience she had with a gentleman on the flight this morning. I will just leave it at this - he was taught a valuable life lesson and he will hopefully internalize it.

Click on these photos to see them larger to give you a sense of the fun that was had yesterday: (The blue capes on our kids were provided by Candlelighters and said "Super Sibling" on the back. Matti's red one - also from Candlelighters - said "Childhood Cancer Survivor." Mine & Nicki's and the others said "Team Matti" on the back and were done by Nicol Montalto.)


First, the pre-race waiting...and waiting.

So, of course, we take pictures.

Letting the boys take a walk break

Crossing the start line

This really is one of my favorites

Super Woman

 Finding some shade after the race to enjoy each other's company...and to take some pictures.