Depending on your definition of fun.
Her whole body is in pain. She has plenty of meds to choose from for the many symptoms and side effects that come with pumping your veins full of toxic liquid. She was finally able to get some rest on Saturday afternoon and Sunday.
I was very proud of her decision to go to sacrament meeting right after I picked her up from the airport. She asked if she had to change her clothes and Nicki and I told her she didn't have to.
She left just after the sacrament was finished and went home to sleep.
Then, today, she decided to try going to school. It wore her out. She hid out in Nicki's cubicle for a couple of hours. We may have to consider having her finish the school year homebound. It's not really what she wants to do. But if she can't get through a day in school...
She really keeps a great attitude, despite the pain and other side effects. I'm so proud of her.
As soon as my phone is done backing up to the Verizon Cloud, then I will have access to put some of these pictures on this blog. I will probably just edit some previous posts to add pictures as applicable.
Monday, April 27, 2015
Friday, April 24, 2015
Treatment Begins
I realize I should probably include pictures to help make this more interesting for everyone, and I will get those in, I'm sure. Sometime.
The doctors at Primary Children's wanted to start her chemotherapy with an overnight stay.
Twelve hours after the end of her initial treatment, it's clear why. She's really feeling sick. She didn't get to sleep most of the night.
They have been giving her all kinds of anti-nausea medicine to try to help her relax and get some sleep. For that matter, for Nicki to get some sleep, as well.
Treating cancer is an interesting irony. Killing the body in order to save the life.
We are very grateful that all the MRIs and CTs and scans and procedures she's had in the past couple of weeks all have been unable to find evidence of cancerous tumor or mass.
The doctors at Primary Children's assured us that is very good news. And we certainly believe that. And then there's the part of you that wonders, "Is there any chance the original diagnosis was just wrong?" And, "Does that mean she really has cancer?" And does she really have to go through chemotherapy and radiation?"
Dr. Wright affirmed the diagnosis is correct. Obviously, the doctor who cleaned out the mass and stuff he found did an exceptional job getting it all out. But the risk of small remnants that cannot be otherwise detected by these many tests is to great to leave it untreated. But all of this points to the greater possibility of positive results - completely eradicating the cancer from her.
I can't wait for her to get back. Unfortunately, I can't give her a hug or hold my baby because I am getting a cold. Such perfect timing.
When Matti was an infant, Nicki and I carried hand sanitizer everywhere we went. We used it like crazy and made everyone use it who wanted to interact with her. If anyone showed signs of illness, they were not allowed near her.
Our parents were (for the most part) patient with us. Our brothers and sisters didn't know any better.
Here we are 17 years later and we will be doing the same thing. The difference is 17 years ago, we were overprotective new parents. Now, she will have an ever decreasing immune system and not being vigilant could truly risk her health.
Aside from that, Matti and Nicki are on information overload from the past two days - which means I probably will be, too, when I get hold of all the reading they are being sent home with.
Lastly, there are so many good people out there who are making it financially possible to do this without completely interrupting the other kids' lives. Not to mention family who come to help out (Moms) and friends who provide meals and the rest.
Of course, these things will start to dwindle (except moms, of course), but we are very grateful for all the help we are currently receiving. It has been such a blessing to our family.
The doctors at Primary Children's wanted to start her chemotherapy with an overnight stay.
Twelve hours after the end of her initial treatment, it's clear why. She's really feeling sick. She didn't get to sleep most of the night.
They have been giving her all kinds of anti-nausea medicine to try to help her relax and get some sleep. For that matter, for Nicki to get some sleep, as well.
Treating cancer is an interesting irony. Killing the body in order to save the life.
We are very grateful that all the MRIs and CTs and scans and procedures she's had in the past couple of weeks all have been unable to find evidence of cancerous tumor or mass.
The doctors at Primary Children's assured us that is very good news. And we certainly believe that. And then there's the part of you that wonders, "Is there any chance the original diagnosis was just wrong?" And, "Does that mean she really has cancer?" And does she really have to go through chemotherapy and radiation?"
Dr. Wright affirmed the diagnosis is correct. Obviously, the doctor who cleaned out the mass and stuff he found did an exceptional job getting it all out. But the risk of small remnants that cannot be otherwise detected by these many tests is to great to leave it untreated. But all of this points to the greater possibility of positive results - completely eradicating the cancer from her.
I can't wait for her to get back. Unfortunately, I can't give her a hug or hold my baby because I am getting a cold. Such perfect timing.
When Matti was an infant, Nicki and I carried hand sanitizer everywhere we went. We used it like crazy and made everyone use it who wanted to interact with her. If anyone showed signs of illness, they were not allowed near her.
Our parents were (for the most part) patient with us. Our brothers and sisters didn't know any better.
Here we are 17 years later and we will be doing the same thing. The difference is 17 years ago, we were overprotective new parents. Now, she will have an ever decreasing immune system and not being vigilant could truly risk her health.
Aside from that, Matti and Nicki are on information overload from the past two days - which means I probably will be, too, when I get hold of all the reading they are being sent home with.
Lastly, there are so many good people out there who are making it financially possible to do this without completely interrupting the other kids' lives. Not to mention family who come to help out (Moms) and friends who provide meals and the rest.
Of course, these things will start to dwindle (except moms, of course), but we are very grateful for all the help we are currently receiving. It has been such a blessing to our family.
Monday, April 20, 2015
After 2 Weeks: It's About to Get Real
Not that it isn't real right now. Trust me, we are all too aware of the reality.
But, after some more diagnostics and a visit to Primary Children's Hospital in an effort to choose the right doctor for Matti, she is starting chemotherapy on Thursday, April 23. Lifesaving treatment that makes life really rough during the treatment.
Up close and personal, now, for her and our family.
The good news: 24 weeks. Isn't it odd when you are looking forward to 24 weeks of chemotherapy? Our first information was that we would be looking at 43 weeks. So, yeah, it's good news.
Her doctor we chose - Dr. Wright of the Huntsman Cancer Institute and Primary Children's Hospital - is an expert in pediatric oncology. Specifically, soft tissue sarcomas, which rhabdo is. She stated that over 80% of the patients she sees have soft tissue sarcomas.
In her words, "We expect her to beat this and have a good life after the treatment." No doubt, we appreciate the confidence. And it wasn't false hope type of confidence you might hear sometimes.
Yes, this is extremely rare in children her age, according to Dr. Wright. But it is a favorable site to treat and the subsequent scans seem to indicate there has been no spreading and there is no, so far, evident large remaining tumor cells in the site it was found.
Her doctor who found it was quite aggressive in trying to remove something he found and didn't like and felt he needed to get rid of it. Apparently, he did a good job, which Dr. Wright said is also very rare when it is found on accident.
And school. Her teachers and counselors have been very supportive and accommodating with all the time she's been missing for tests and so forth. She has one more tomorrow for the doctor to get a close up look at the affected area to see what she can see and collect another sample or two to test. This is not Dr. Wright, but a local doctor with specialties in what needs to be done.
Matti is concerned about the future. School. College applications come next year. Testing that is supposed to be done. How is she going to finish and maintain her grades. Obviously, all second in line to her life, but real concerns for a 17-year-old. Her parents worry about it, too, naturally. There are good people who are working with her and us to develop plans to get the work done - including something called "homebound," if necessary.
Lastly, she got her "port" put in this past week. Basically, it's a receptacle that is hooked directly to her veins to pumps in chemo, or anything else the doctors need to over the next several months. Cool thing about it is that it is under her skin. So she has a weird bump in front of her shoulder, but the nurses know right where to put in her IVs and stuff from now on. No flattening veins or track marks.
Several of the "Laurels" - girls her age at church - wanted to cut their hair really short to show support for Matti and donate their hair to "Locks for Love," which is where Matti donated her hair. Although there is some dissent on the part of some leaders in our local congregation (potential hurt feelings for girls who don't want to do it and other such (frankly) BS nonsense), I believe the girls are still going to do it on their own, which they do (and should) totally have the right to do.
But, after some more diagnostics and a visit to Primary Children's Hospital in an effort to choose the right doctor for Matti, she is starting chemotherapy on Thursday, April 23. Lifesaving treatment that makes life really rough during the treatment.
Up close and personal, now, for her and our family.
The good news: 24 weeks. Isn't it odd when you are looking forward to 24 weeks of chemotherapy? Our first information was that we would be looking at 43 weeks. So, yeah, it's good news.
Her doctor we chose - Dr. Wright of the Huntsman Cancer Institute and Primary Children's Hospital - is an expert in pediatric oncology. Specifically, soft tissue sarcomas, which rhabdo is. She stated that over 80% of the patients she sees have soft tissue sarcomas.
In her words, "We expect her to beat this and have a good life after the treatment." No doubt, we appreciate the confidence. And it wasn't false hope type of confidence you might hear sometimes.
Yes, this is extremely rare in children her age, according to Dr. Wright. But it is a favorable site to treat and the subsequent scans seem to indicate there has been no spreading and there is no, so far, evident large remaining tumor cells in the site it was found.
Her doctor who found it was quite aggressive in trying to remove something he found and didn't like and felt he needed to get rid of it. Apparently, he did a good job, which Dr. Wright said is also very rare when it is found on accident.
And school. Her teachers and counselors have been very supportive and accommodating with all the time she's been missing for tests and so forth. She has one more tomorrow for the doctor to get a close up look at the affected area to see what she can see and collect another sample or two to test. This is not Dr. Wright, but a local doctor with specialties in what needs to be done.
Matti is concerned about the future. School. College applications come next year. Testing that is supposed to be done. How is she going to finish and maintain her grades. Obviously, all second in line to her life, but real concerns for a 17-year-old. Her parents worry about it, too, naturally. There are good people who are working with her and us to develop plans to get the work done - including something called "homebound," if necessary.
Lastly, she got her "port" put in this past week. Basically, it's a receptacle that is hooked directly to her veins to pumps in chemo, or anything else the doctors need to over the next several months. Cool thing about it is that it is under her skin. So she has a weird bump in front of her shoulder, but the nurses know right where to put in her IVs and stuff from now on. No flattening veins or track marks.
Several of the "Laurels" - girls her age at church - wanted to cut their hair really short to show support for Matti and donate their hair to "Locks for Love," which is where Matti donated her hair. Although there is some dissent on the part of some leaders in our local congregation (potential hurt feelings for girls who don't want to do it and other such (frankly) BS nonsense), I believe the girls are still going to do it on their own, which they do (and should) totally have the right to do.
Friday, April 10, 2015
One Week In: #CancerSucks
Let's be real here: This week has been about as bad as one would expect when their 17-year-old daughter is diagnosed with a life-threatening disease.
Obviously, there's been the constant barrage of texts, Facebook posts and phone calls asking about what is going on from people who genuinely just want to know. They are concerned. You realize just how hard that is for someone to stay on top of when you are in that position.
So, I guess that's why I moved my earlier post that I did the first night to this new blog. Besides, I don't know how often I am going to feel like keeping up the tone that I have been keeping on The Avery Family.
After 3 or 4 times repeating the same information (sometimes that you really would not rather repeat because it increases the reality of it all), you tire at the thought of going through it again, no matter how good of a friend is calling.
Now, this is not to say that you should all stop calling or texting. Not at all. But this will make it easier to get many of the details of this journey to you for us.
It's called rhabdomysarcoma. It is pretty exclusively a childhood cancer, although it can affect, in rare cases, adults.
We have met with 2 oncologists this week, with another planned next week. She has had CTs, MRIs, PET/CTs, other labs and samples done all throughout this week. She's been at doctors more than at school this week.
What we hear, so far, seems to be optimistic - and we are going to take it and run with it. Optimism notwithstanding, the treatment will be chemotherapy, no matter what. Matti, on hearing from a doctor (although she certainly had an idea, but, again, hearing it from a doctor makes it sink in) that she will be losing her hair during the chemotherapy, decided she is going to take control of something she can in a situation where she will not have a lot of control over.
So, on Wednesday night, she had her hair cut very short. Very short. She is so beautiful. Hair length can't change that, in case you were wondering.
However, it does make it easier to prepare for her princess party gigs. The wigs fit much more easily and with less prep time braiding hair. Heavens know how much time I have spent in the last few weeks braiding tiny tight braids all around her head and...oh...yeah...that was Nicki, not me. You get the idea, though.
Please don't be offended if we don't talk to you about all the details sometimes. We promise we will not get offended by the well-intended, but (frankly) stupid remarks that come out of some of your mouths. You are our friends and family. We love you. We know you love Matti. And everyone else, but right now mostly Matti.
More to come...
Obviously, there's been the constant barrage of texts, Facebook posts and phone calls asking about what is going on from people who genuinely just want to know. They are concerned. You realize just how hard that is for someone to stay on top of when you are in that position.
So, I guess that's why I moved my earlier post that I did the first night to this new blog. Besides, I don't know how often I am going to feel like keeping up the tone that I have been keeping on The Avery Family.
After 3 or 4 times repeating the same information (sometimes that you really would not rather repeat because it increases the reality of it all), you tire at the thought of going through it again, no matter how good of a friend is calling.
Now, this is not to say that you should all stop calling or texting. Not at all. But this will make it easier to get many of the details of this journey to you for us.
It's called rhabdomysarcoma. It is pretty exclusively a childhood cancer, although it can affect, in rare cases, adults.
We have met with 2 oncologists this week, with another planned next week. She has had CTs, MRIs, PET/CTs, other labs and samples done all throughout this week. She's been at doctors more than at school this week.
What we hear, so far, seems to be optimistic - and we are going to take it and run with it. Optimism notwithstanding, the treatment will be chemotherapy, no matter what. Matti, on hearing from a doctor (although she certainly had an idea, but, again, hearing it from a doctor makes it sink in) that she will be losing her hair during the chemotherapy, decided she is going to take control of something she can in a situation where she will not have a lot of control over.
So, on Wednesday night, she had her hair cut very short. Very short. She is so beautiful. Hair length can't change that, in case you were wondering.
However, it does make it easier to prepare for her princess party gigs. The wigs fit much more easily and with less prep time braiding hair. Heavens know how much time I have spent in the last few weeks braiding tiny tight braids all around her head and...oh...yeah...that was Nicki, not me. You get the idea, though.
Please don't be offended if we don't talk to you about all the details sometimes. We promise we will not get offended by the well-intended, but (frankly) stupid remarks that come out of some of your mouths. You are our friends and family. We love you. We know you love Matti. And everyone else, but right now mostly Matti.
More to come...
Friday, April 3, 2015
It Was Only In My Dreams
At least, that's what I keep expecting to find out. It's kind of a foggy non-reality right now. The same is true for the rest of the family.
Of course, this entire week has not been the greatest spring break ever. Only fitting that we end it with news of cancer. And for my daughter.
I'm her father. All I can do is call doctors and research and hug her. It doesn't feel like enough. I'm frustrated, confused and angry, too. I try to convince myself that when we next meet with the doctors, they will say, "Oops, we made a mistake. Our bad."
Of course, this entire week has not been the greatest spring break ever. Only fitting that we end it with news of cancer. And for my daughter.
I'm her father. All I can do is call doctors and research and hug her. It doesn't feel like enough. I'm frustrated, confused and angry, too. I try to convince myself that when we next meet with the doctors, they will say, "Oops, we made a mistake. Our bad."
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