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.

She Said What? Well, She Has Cancer.

So, today she has another vincristine push. Next week she is in Salt Lake for radiation. I haven't really described how that is going to go, but I will leave it, for now, as saying the targeted radiation sessions will not be a pleasant experience.

And according to my calendar, October 23rd will be her last chemo treatment, so get the balloons ready. She will still suffer the effects of the drug for a few days, though.

This past weekend was rough again. While we were a little more prepared with her being hydrated the night before, the night of and the night after, it still made her very sick. As far as school goes, it was good too have a 4-day weekend so she didn't have that to worry about on top of everything else.

We have been quite fortunate that her blood counts have been high enough through this entire course that she hasn't had to be kept home from school. She still needs to be careful and we don't want people hanging all over her and drooling, or whatever, but being out and about hasn't been too much of a threat for her so far. We just have to be smart about it.

But she did her chemo today, even though it means she will miss school tomorrow, because she wants to be up for going to the Candlighters 5k on Saturday. Cassidy will be pushing her in a wheelchair for the 1 mile walk. Matti really is looking forward to seeing everyone who has signed up to come to that event in her support.

So, sometimes, she will say something that I would probably get on her case for, except...cancer. For example, today on Facebook, she referred to a certain Republican presidential candidate as a douche bag.

Yes, she's 17. Yes, it's not the worst thing she could say about someone. No, I can't claim to have never used the word myself. No, I don't wholeheartedly disagree with the use of that word to describe that person.

But, I try to teach my children to be a little better than I am. But, frankly, her emotions just might be a little more raw these days, especially since she was likely sitting in the clinic waiting for her chemo push. And, she's 17. So, you know what? She gets a pass. It happens. Deal with it, I say.

Love to all. I will be taking and posting many pictures from our experience this Saturday.

September Is Childhood Cancer Awareness Month

Not like we need somebody to tell us that children get cancer. We are quite aware of that fact.

Matti had her chemo treatment this past Friday, as planned. She has 51 days until her last chemo treatment. Then, the healing and strengthening can begin in earnest. I have started my own countdown on my calendar, but Matti wants to wait to do a real countdown until after radiation the week of the 14th.

The following was from Nicki's FB post, which many of you have already read. She and I have noticed that some people don't seem to really get it because Matti puts on such a strong face at school and elsewhere. They will act like it's no big deal to go what she's going through because we are getting such a great prognosis at this point.

But Matti uses every bit of her strength for her time at school and then gets home and crashes for hours. I have interjected some of my own thoughts:

"It's Childhood Cancer Awareness Month!

This is our life right now. It's hard to share really personal stuff on Facebook, but the more families I meet that have a child with cancer, the more I feel the need to share.

Matti goes through each day with a brave face and she pushes herself on a regular basis. Today she killed it at her Vocal Jazz audition (Obviously, since she has such an amazing voice - control, tone, strength and musicality - in my completely unbiased opinion, granted, but no less true) and then lead a soprano sectional. She went to school and did her best, trying not to show the exhaustion she feels. She also just had chemo on Friday, and will have more this week, and more next week and on and on for what seems like eternity.

People don't see her barely make it upstairs to get in bed at the end of the day. They don't see her pain, they don't feel her loss, they don't know what it is like for her...they only see the strong girl in front of them because that is what she is...the strongest girl I know.

And this is the reality for so many children with cancer. We see their strength and their bravery because that is what keeps them going on the hardest, darkest days. Their bravery is what keeps US ALL going on the hardest, darkest days.

So, here is to all of the sweet children fighting this disease. You are our role models of what we should be focused on in life and how we should be.

And here is to all of you who send your love, support and prayers. You all truly do make a difference."

Next Saturday is the Candlelighters 5k in Henderson and a couple of dear friends started Team Matti to participate in the run. As of today, her team is the 3rd largest team participating in the race and only need 2 more people to overtake 2nd place. It's really humbling and cool to have all this support from friends and family. We have friends and family coming from as far away as Phoenix and Boise to come support her.

I am sure that I will not leak from my eyes that morning when I see everyone there.

Her treatment this Friday is the larger one, and so we are glad it is a four day weekend for school. It will give her an additional day to rest before getting back to school. We are planning ahead for this one to make sure she gets the hydration she needs that will help combat the nausea that comes with the dactinomycin.