And way too many to go.
The rest of last week went okay leading up to her chemo treatment her in Las Vegas. She did get a wig that she is pretty excited about to be able to have as an option to scarves and beanies. I don't know if you know this, but wigs are expensive. A special thanks goes out to Candlelighters. They helped offset a large portion of that cost.
So, if you are looking for someplace to send dollars at some point in the future, remember them. I know we will. For those of you in the Las Vegas area who like to run (or who don't like to run, but would be willing to move their body using their legs from one point to another point about 3.1 miles away), register for the Superhero 5k on Saturday, September 12. I know we will. Watch for more information about Team Matti.
Anyway, the chemo pushes are now on Friday afternoons. They have to be at least 7 days apart and Primary Children's did her previous one on Friday. On the plus side, it makes for an early start to the weekend. Again, whatever positive news we can get.
The nurses at the Las Vegas Cure 4 Kids Clinic are so fabulous. (By the way, another very good option for your donation dollars in the future.) They make Matti feel so comfortable and supported and loved when she is there. Definitely some special people.
Then those same cousins who had the shirts from last week, came down to visit for the weekend. And the timing was perfect. She could have her cousins to talk to and watch movies with. And on this first night of a chemo push, when the pain can be so bad, it was a welcome distraction. It seemed to help her get through the night and next day.
Plus, we dragged her to see Avengers: Age of Awesome...I mean...Ultron on Saturday. Yes, going out and about that soon after can be tough. To make it tougher, she was with a group of 19 Averys. But, those Averys are family...and she was watching Avengers. Sure, being around so much family is good, but Avengers? How can you beat that? She will have a similar "outing," if you will, with the Huntsmans in a few short days. A group of 24 of them. And some awesomeness that should make her smile.
She has been trying to get caught up on as much homework as she can for all her classes so her teachers will pass her this year. She has missed a lot of class and the discussion that goes with it. She's a good student, though. Of course, schoolwork doesn't seem to be as important to her right now as other things. But we try to remind her that it is necessary because she will still have colleges to apply for and so on at the other end of this experience.
On days she is feeling more worn down, this can be particularly difficult. Because, really, how important is it?
Overall, though, she's doing so well, 5 weeks in. She has definitely had to fight for it, but she is doing great. Knowing there are 19 treatments left, plus the radiation, is very unnerving because I don't want to ever feel like everything is going okay. As soon as I say that, then what will happen?
So I remain cautiously optimistic and guarded about it all. When people at work ask how she is doing, the response is a polite, "She's doing good." When you ask (the readers of this blog who are special friends and family to us, in case you didn't get what "you" meant), I will tend to be a little more open about it. Not because I feel like I can complain around you, but because I know you truly care...well, maybe the complaining part too.
Tuesday, May 26, 2015
Monday, May 18, 2015
Cousins Are Cool
And so are Grandmas, but I am pretty sure Matti was particularly looking forward to seeing her cousins.
She was pretty worn down from this weekend's round in Salt Lake, but she told Nicki she still wanted to get dressed and ready - even makeup - to go to my mom's house. It's second Sunday and Averys within roughly 40 miles of ABO HQ meet for sustenance intake.
When they got to HQ, her cousins had these ready for her:
And, yes, even when it is raining outside in Las Vegas, like it is right now, my allergies can still affect me...
Anyway, I think it really helped her to have that time and the support from her extended family.
The hospital was better prepared this time with all the drugs to counteract side effects of the chemo. They kept her pretty well full of other things to keep her a little more comfortable than last time. And, it seems that they succeeded. She was released after just one night this time.
They sent Nicki a bunch of things to help for the next couple of nights, one of which was an IV to help flush out some of the narcotics and others because, for all the relief of nausea and pain, there was an increase in...how shall I put this? It was a good weekend for her to listen to the Beatles...or Led Zeppelin. Or Pink Floyd.
It's an interesting trade-off. Which would you prefer? Matti still goes back and forth. But she was definitely ready to be more lucid.
Sunday night was a little more difficult as some of the pain set in again. Thankfully, there were still sufficient meds available to help her relax and make it through the night, but without the psychotic episodes.
This was also a difficult weekend, as a teenage girl, because it was the Prom weekend at her school. So all her friends (and her sister) were going out and having fun and dressing in Prom dresses and all that dreamy make-believe stuff, while she had to deal with real-world fight between life and death.
On Saturday, though, an uncle and a cousin (not one of the two above) went to visit her and brought a rose for her, since she wouldn't be wearing a corsage that night. It was a very sweet thing to do, that's for sure. Who you ask? Her uncle whose name rhymes with the blue printer cartridge and his son.
Today, she met with the radiation oncologist. That's a meeting we've really been looking forward to. You know that's sarcasm, right?
Earlier in the week, Dr. Wright called us and told us there were some really positive discussions with the team on the type, dose, and duration of the radiation Matti would receive. She said they had discussed Matti's case quite a bit.
Do you know how comforting it is to hear that there is a team of doctors discussing your child's care, even when you aren't around? It may sound silly, but I have wondered if that actually happened in other cases I have heard of.
But, with the meeting today, while there are still a couple of points that he would like to clarify with Matti's doctors here who found the cancer and did subsequent exams and biopsies, he believes there is a very good chance that rather than 6 weeks of radiation, it could be a less-than-two-week course or treatment. The dose and delivery method would allow for this shorter course.
If this holds, there is just one more blessing we can count in this trial. I know I haven't really spelled out all the things that have happened, but we have been very blessed with divine inspiration and introductions to people at the right time and in the right place. Too much for any sane person to claim it's all coincidence.
I will save the rest of my discourse on the Divine for another time. And for whatever reason, we have been very blessed so far on this journey.
She was pretty worn down from this weekend's round in Salt Lake, but she told Nicki she still wanted to get dressed and ready - even makeup - to go to my mom's house. It's second Sunday and Averys within roughly 40 miles of ABO HQ meet for sustenance intake.
When they got to HQ, her cousins had these ready for her:
And, yes, even when it is raining outside in Las Vegas, like it is right now, my allergies can still affect me...
Anyway, I think it really helped her to have that time and the support from her extended family.
The hospital was better prepared this time with all the drugs to counteract side effects of the chemo. They kept her pretty well full of other things to keep her a little more comfortable than last time. And, it seems that they succeeded. She was released after just one night this time.
They sent Nicki a bunch of things to help for the next couple of nights, one of which was an IV to help flush out some of the narcotics and others because, for all the relief of nausea and pain, there was an increase in...how shall I put this? It was a good weekend for her to listen to the Beatles...or Led Zeppelin. Or Pink Floyd.
It's an interesting trade-off. Which would you prefer? Matti still goes back and forth. But she was definitely ready to be more lucid.
Sunday night was a little more difficult as some of the pain set in again. Thankfully, there were still sufficient meds available to help her relax and make it through the night, but without the psychotic episodes.
This was also a difficult weekend, as a teenage girl, because it was the Prom weekend at her school. So all her friends (and her sister) were going out and having fun and dressing in Prom dresses and all that dreamy make-believe stuff, while she had to deal with real-world fight between life and death.
On Saturday, though, an uncle and a cousin (not one of the two above) went to visit her and brought a rose for her, since she wouldn't be wearing a corsage that night. It was a very sweet thing to do, that's for sure. Who you ask? Her uncle whose name rhymes with the blue printer cartridge and his son.
Today, she met with the radiation oncologist. That's a meeting we've really been looking forward to. You know that's sarcasm, right?
Earlier in the week, Dr. Wright called us and told us there were some really positive discussions with the team on the type, dose, and duration of the radiation Matti would receive. She said they had discussed Matti's case quite a bit.
Do you know how comforting it is to hear that there is a team of doctors discussing your child's care, even when you aren't around? It may sound silly, but I have wondered if that actually happened in other cases I have heard of.
But, with the meeting today, while there are still a couple of points that he would like to clarify with Matti's doctors here who found the cancer and did subsequent exams and biopsies, he believes there is a very good chance that rather than 6 weeks of radiation, it could be a less-than-two-week course or treatment. The dose and delivery method would allow for this shorter course.
If this holds, there is just one more blessing we can count in this trial. I know I haven't really spelled out all the things that have happened, but we have been very blessed with divine inspiration and introductions to people at the right time and in the right place. Too much for any sane person to claim it's all coincidence.
I will save the rest of my discourse on the Divine for another time. And for whatever reason, we have been very blessed so far on this journey.
Tuesday, May 12, 2015
Round 1 Goes To...
Matti Avery.
If you were bored by Manny v. Floyd, count on our fight to be much more interesting. There will be no dancing or hugging. Punches will be traded all the way down to the wire.
So, I learned this week, in terms of the treatment Matti is receiving, we refer to each set of 3-week treatments as a "Round." It makes sense, since the beginning of each 3 weeks is the big 3-drug chemo cocktail. And even though she is receiving a push in the intervening weeks without any break, the entire period is called a round.
So there you go.
And, yes, chemo got in a few good shots. But Matti proved she can be stronger than what chemo has to dish out here in the early rounds.
I find myself trying to maintain the perspective that there are likely rougher weeks ahead. I say likely, but I think we know that means certainly. But she has responded so well and stayed so positive, one could be tempted to think, "Okay. She's got this."
Don't get me wrong, I believe she does. She is a fighter. That has been clear since she was barely able to walk and speak. Nicki and I always knew we were in for it when she got older.
Still seven rounds to go in this fight of the century. And we know chemo has more to give. And it's going to wear Matti down. But she's got a coach's corner that will give her everything available to help her.
Not to mention the entire arena full of Matti's fans. In fact, I'm not aware of even one fan of chemo OR cancer.
She has been to school both day this week, again, and will go tomorrow. She gets tired and when she is at school, she able to go to Nicki's office and rest a little and then go back to a class.
Matti is so blown away by the help and kindness shown by so many. Her parents are, too. We are all looking forward to having some conversations with her primary team of doctors (I suppose a pun is intended). Just to get a status update from them and their perspective on how she is doing at this point with the symptoms experienced and blood counts, etc.
Stay tuned, as the fight continues.
If you were bored by Manny v. Floyd, count on our fight to be much more interesting. There will be no dancing or hugging. Punches will be traded all the way down to the wire.
So, I learned this week, in terms of the treatment Matti is receiving, we refer to each set of 3-week treatments as a "Round." It makes sense, since the beginning of each 3 weeks is the big 3-drug chemo cocktail. And even though she is receiving a push in the intervening weeks without any break, the entire period is called a round.
So there you go.
And, yes, chemo got in a few good shots. But Matti proved she can be stronger than what chemo has to dish out here in the early rounds.
I find myself trying to maintain the perspective that there are likely rougher weeks ahead. I say likely, but I think we know that means certainly. But she has responded so well and stayed so positive, one could be tempted to think, "Okay. She's got this."
Don't get me wrong, I believe she does. She is a fighter. That has been clear since she was barely able to walk and speak. Nicki and I always knew we were in for it when she got older.
Still seven rounds to go in this fight of the century. And we know chemo has more to give. And it's going to wear Matti down. But she's got a coach's corner that will give her everything available to help her.
Not to mention the entire arena full of Matti's fans. In fact, I'm not aware of even one fan of chemo OR cancer.
She has been to school both day this week, again, and will go tomorrow. She gets tired and when she is at school, she able to go to Nicki's office and rest a little and then go back to a class.
Matti is so blown away by the help and kindness shown by so many. Her parents are, too. We are all looking forward to having some conversations with her primary team of doctors (I suppose a pun is intended). Just to get a status update from them and their perspective on how she is doing at this point with the symptoms experienced and blood counts, etc.
Stay tuned, as the fight continues.
Friday, May 8, 2015
Morphling Makes It Better
That's what I read in Mockingjay, anyway.
The real-world alternative does, too. We were a little on the fence, but the alternative was risking getting behind on pain meds again and possibly going to the ER.
Matti did much better last night. Yes, she's a little high, but the pain is managed. Thankfully, we've already written off Fridays for school purposes. And she will probably not be ready for an attack on the capitol.
I mentioned in the first post that she had cut her hair very short with the plan to donate it to Locks of Love. She got a certificate yesterday:
So, it was actually the past couple of days that her hair was coming out in earnest. Each time she ran her hands through her hair, she would come away with a chunk of hair.
Consequently, she decided last night was the right time to own it even more completely. Now, she didn't want us to go with a razor, which I was okay with because I didn't want to accidentally cut her head. The doctors tell us that it's generally best for chemo patients to avoid bleeding.
The result? Beauty, of course. This is Matti we're talking about. Besides, one trait she did not get from me (thankfully) is the shape of/or my giant head.
.
The real-world alternative does, too. We were a little on the fence, but the alternative was risking getting behind on pain meds again and possibly going to the ER.
Matti did much better last night. Yes, she's a little high, but the pain is managed. Thankfully, we've already written off Fridays for school purposes. And she will probably not be ready for an attack on the capitol.
I mentioned in the first post that she had cut her hair very short with the plan to donate it to Locks of Love. She got a certificate yesterday:
So, it was actually the past couple of days that her hair was coming out in earnest. Each time she ran her hands through her hair, she would come away with a chunk of hair.
Consequently, she decided last night was the right time to own it even more completely. Now, she didn't want us to go with a razor, which I was okay with because I didn't want to accidentally cut her head. The doctors tell us that it's generally best for chemo patients to avoid bleeding.
The result? Beauty, of course. This is Matti we're talking about. Besides, one trait she did not get from me (thankfully) is the shape of/or my giant head.
 |
| Awaiting the clippers. |
 |
| At the end |
 |
| Wearing a new beanie |
I went ahead and refreshed my cut and Mikey wanted his done too. But he wanted it shaved. Shaved. As in...shaved. Okay, sure. Why not?
 |
| Notice the gleam off his dome. :) |
He wanted to do it because he "loves his sister." He's a sweet little brother.
Thursday, May 7, 2015
It Shouldn't Surprise Me, Really...
I am so proud of Matti and impressed with watching her attitude and choices she makes in the face of the pain, sickness and fatigue.
Hey, she's not perfect. I am not saying that. And she definitely has her moments when she, um, expresses her displeasure with the circumstances.
From attending school every day this week, including the first half of today, to a full hour and a half at church this past Sunday. She even came to Seminary on Monday morning. She tried again on Wednesday morning, but didn't make it.
By the way, for those who may not know, I teach Seminary (daily Sunday School, if you will) at a church building across the street from her high school every weekday morning at 6 am. SIX AM!!
It's difficult enough for me, let alone a teenager. Let alone a teenager enduring chemotherapy treatments. But, of her own accord, she chose to go.
Nicki and I are not pushing anything with her - school or church - because we don't know how she is going to feel at that moment. And she has been making decisions that impress and, like I said, make me proud.
Hey, she's not perfect. I am not saying that. And she definitely has her moments when she, um, expresses her displeasure with the circumstances.
I haven't seen her yet today, but I can't imagine she is less apprehensive about how tonight is going to go than I am. After last week, knowing what is ahead cannot be easy. The doctors gave some additional prescriptions that are meant to help with the pain. We will see how it works tonight.
We have some questions about some side effects we have noted this past week and hope to get some good insight.
So many continue to help our family in meaningful ways each day. It's amazing. From cleaning a bathroom, to taking a load of laundry, to picking up prescriptions, to providing a meal. The smallest things really make such a huge difference.
Now, if we could just find someone to take the dogs...
Friday, May 1, 2015
Las Vegas Treatment
So, the basic idea is that every 3 weeks, she will have treatment in Salt Lake City and the in between weeks, she will do here, in Las Vegas.
We didn't know much about it, except which of the three toxic poisons - uh...I mean medicines - would be injected into her blood stream those weeks. We can read the typical side effects - none of which include nausea, thank goodness. That's a good thing.
Of course, there's always the bone pain. She had a miserable night last night. She couldn't understand why it was hurting so bad when she didn't remember it hurting so bad last week.
She was hooked to an IV for 2 days, we reminded her. Probably why she didn't remember the pain.
It is very hard to look into your child's face when there is nothing you can do for her pain and her face just screams, "Help me! Please!" She tried to be so brave and not voice it too much, but her eyes. Her beautiful, beautiful eyes screamed it. That's a parental pain that cannot be described unless you go through it, I think.
Sure, we have had sick kids and a similar look when they are feeling miserable. But when you have been through it and know that it is not really as bad as they say, it is easier (in my view) to talk them through it.
I have no point of reference for this. Just that she placed it in the 9-10 range.
A sedative was finally able to help her rest a little bit and by this morning, the pain seems to be more manageable with the meds we have. The question for her is, "Can you do this 14-15 more times?"
We really appreciate all the help that has been given and offered. We know there are so many people who want to help. Sometimes, we get offers for some help and then someone else is right there when we actually need the help offered previously. I hope that you know that if you aren't called to help fill a need, it isn't because we hate you or dislike you (that includes even you, *name withheld to protect the innocent*). Or even that we don't trust you to be able to do what is needed. It is just timing.
I know we feel your prayers. It's humbling to know how many people are keeping Matti in their prayers. Not just friends and family, but friends and acquaintances of those friends and family. It's comforting and bolsters our resolve. It's very real. Very felt. And very appreciated.
We didn't know much about it, except which of the three toxic poisons - uh...I mean medicines - would be injected into her blood stream those weeks. We can read the typical side effects - none of which include nausea, thank goodness. That's a good thing.
Of course, there's always the bone pain. She had a miserable night last night. She couldn't understand why it was hurting so bad when she didn't remember it hurting so bad last week.
She was hooked to an IV for 2 days, we reminded her. Probably why she didn't remember the pain.
It is very hard to look into your child's face when there is nothing you can do for her pain and her face just screams, "Help me! Please!" She tried to be so brave and not voice it too much, but her eyes. Her beautiful, beautiful eyes screamed it. That's a parental pain that cannot be described unless you go through it, I think.
Sure, we have had sick kids and a similar look when they are feeling miserable. But when you have been through it and know that it is not really as bad as they say, it is easier (in my view) to talk them through it.
I have no point of reference for this. Just that she placed it in the 9-10 range.
A sedative was finally able to help her rest a little bit and by this morning, the pain seems to be more manageable with the meds we have. The question for her is, "Can you do this 14-15 more times?"
We really appreciate all the help that has been given and offered. We know there are so many people who want to help. Sometimes, we get offers for some help and then someone else is right there when we actually need the help offered previously. I hope that you know that if you aren't called to help fill a need, it isn't because we hate you or dislike you (that includes even you, *name withheld to protect the innocent*). Or even that we don't trust you to be able to do what is needed. It is just timing.
I know we feel your prayers. It's humbling to know how many people are keeping Matti in their prayers. Not just friends and family, but friends and acquaintances of those friends and family. It's comforting and bolsters our resolve. It's very real. Very felt. And very appreciated.
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