I just had a moment that I felt compelled to share.
Often, I think of the moms that have lost their children - be it to cancer, or some other equally awful nightmare. When I think of those moms, I think that the hardest part for me would be the lack of physical contact. I am tactile when it comes to my kids. I hug and kiss and cuddle a lot. I rub backs, and play with hair. Now that Matthew is bald, I rub his head. A lot.
Often, when I think of these poor moms, I think how sad it is that they can't hug their kids, and I think that I should hug my kids extra because I can. You hear that sometimes, you know. Really appreciate those hugs. Give them an extra.
Well, just now, I hugged Matthew, and it was a really good one. He cuddled right into me. And I smelled him, and the thought came to me that without medical intervention, that hug wouldn't have been possible by now.
The very fact that I can hug my little boy is a miracle. I am thankful every day for his life. I will be thankful every day for the rest of his life (which hopefully will be much longer than mine) that I have the ability to hug him.
I think cliches become cliche for a reason. People have said it so many times that it becomes overdone, but people say it so much because it's true!
So, give your kids an extra hug tonight, in honor of the moms who can't. Really, truly appreciate the feel of their solid little bodies. Smell their hair. Appreciate their vitality. Their warmth.
Remember how much you love them, despite all the distractions and drama that come with real life. I know parenting is not all sunshine and roses, and even when your kid has cancer, and you're so grateful for the ability to hug him, the reality is that you cannot possibly appreciate every moment with him. When you're trying to do something, and they are picking fights with everyone in the house (including you) because they're so bored and stir crazy from being home bound for six months, it's HARD to remember that you're supposed to appreciate every second. And the truth is, no one does. Some seconds, or minutes, or hours, or even days can be rough!
Mary Anne Radmacher said, "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"
That's one of my favorite quotes. And it's how I'm beginning to feel. Some of the days we've been through have been really hard. And the things that are supposed to get done don't get done. And that's frustrating because there are only so many hours in a day. All the regular life stuff that went on before the cancer is still there. Plus cancer. But when it doesn't work out like it's supposed to, we try again tomorrow.
In the meantime, I have really learned to appreciate the small but wonderful moments with my kids. Moments when my girls make me laugh. They're both really funny. Moments when I am struck by what a good person Alaina is turning out to be, and how proud I am of who she has become. I can't wait to see what kind of an adult she will be. I love the friendship we have developed over the last few years. Moments when I can listen to Allison's music and just let my heart feel joy. I am so proud of the initiative she has to take things into her own hands. I worry so much about her during these tumultuous Jr. High years, but she seems stronger every day, and I'm so proud of her for fighting to make her life better. Moments when Mikey's smile lights up the room, and his love for his baby brother is palpable. He tolerates so much. And moments when I can hug Matthew, who could have been gone by now. He teaches me new things all the time. He is such a wise child. After all, he's had more trials in his 4 years than I have in my whole life. And he still smiles and giggles through almost all of it. He is teaching me to be more resilient, for which I will be forever grateful.
I love my kids. I love hugging my kids. I don't care if it's cliche, I think we should all give them an extra hug tonight and appreciate the fact that they are there in our arms.
Wednesday, January 25, 2012
Friday, January 20, 2012
Awareness
Warning: This blog post is about a social issue in the childhood cancer world, which is unusual for this blog. I don't usually weigh in on this sort of thing, but this one is growing so huge that I wanted to document it for us to look back on, and also to share my thoughts and opinions about it with any of you who are following the news on it.
I know a lot of you come here looking for updates on him - that really is the point of the blog, right? - so I'll give a quick update. He has had 2 days since his last chemo treatment, and yesterday it really wiped him out. He's tired, ornery and woke up at night in pain. Bone pain in his feet. This was a reminder of the last time we went through this type of treatment. I had forgotten, but 2 days after treatment is always the worst day for him. I'm glad there are only 3 more of these days until maintenance! He seems to be feeling better this morning, but is still a little bit grouchy. It'll probably escalate as the day goes on, and he'll need to rest. He'll feel better by the time the next treatment comes along.
Okay. Now I'm stepping on my soap box. If you're here to find out about Matthew, you could totally stop reading here and not miss a thing.
Wow, the childhood cancer community has blown up with media attention lately! It all started with the subject of a bald Barbie. There's a Facebook group that is growing exponentially that has banded together to convince Mattel to make a bald Barbie doll for children suffering from cancer and other illnesses that make you lose your hair - and also to help little girls cope when their mother loses her hair.
It seems like an innocent enough thing, but people have gone insane over it! It is definitely a hot topic, and a lot of my cancer mom friends have avoided weighing in on it at all. Like discussing politics or religion, you will never win.
I can see some of the points from both sides. The Facebook group seems to think this is how we will raise enough money to cure cancer, which is naive to say the least. IF they can convince Mattel to do this, and IF they are willing to donate proceeds, it certainly won't be ALL proceeds. Also, this doll will most likely only be attractive to families going through these events. Meaning it isn't likely to sell millions. Basically, it's not going to help the cancer community as much as these well-meaning individuals think it is.
But, I can't deny that I think a bald Barbie doll would be uplifting for some little girls I know. I could go online right now and find at least 3 pictures of little girls that I know personally who have recently lost their hair, and in these pictures, the girls are bald, and they are holding a Barbie who just got a matching hair cut. Some of the parents think the bald Barbie would only rub salt in the wound of something these girls will want to forget about as soon as they can. I can see that. And I can respect it. But for some of the girls, they're trying to embrace it, and the bald Barbies help them. I can't deny, though, that it's a landmine. I don't know if I'd have the guts to buy a bald Barbie for anyone's kid but my own, and of course, he wouldn't be interested anyway.
Anyway, another major point being made is that the people who oppose it say that it makes them ANGRY that any corporation would profit from the suffering of little girls. It brings out a lot of negative emotions tied to the whole pink phenomenon. Businesses have made so much profit from pink ribbon items made in honor of breast cancer. So much of that money goes into people's pockets, and not towards research. Charities have become greedy, and gone as far as suing one another because the names match too closely.
But, you can't deny that breast cancer has a lot of attention. It is also found a lot earlier now because women are aware of what to look for. The treatment has had a lot of research, resulting in new treatments, better treatments, and ultimately a better cure rate. 99%. That's sort of the Holy Grail of the cancer world.
So, in my mind, the bald Barbie could be the beginning of a little gold ribbon empire. Some of it will be icky, and opportunistic, and I'm not so naive as to think that businesses won't seek a way to profit from it. But even with all of that, I would be thrilled to walk into a Walmart on September (childhood cancer awareness month) 1st to a sea of gold ribbon items donating a portion of proceeds to childhood cancer research. Even if it is pennies on the dollar. It's still pennies that they didn't have for research before.
A lot of parents would rather see the money go straight to the charities that will use it ALL for research. So would I. I just don't think that's realistic in our society. You have to grab people's attention first. Plus, if I'm going to buy the item anyway, why not buy the same item with a gold ribbon, which would prompt the company selling it to make a donation, even if it's a tiny donation?
The way I see it, if I'm going to spend $20 on a Barbie just to turn around and cut off all its hair, I'd rather spend $25 on a Barbie that is already bald, and especially if Mattel will donate $5 or even $2.50 of that money to CureSearch. But if I'm looking for a good cause to spend $20 or $25 on, I would go straight to CureSearch.
When it comes right down to it, I don't think there's any harm in the bald Barbie, and I do think it could do some good. Not TONS of good, but some good. And it will make little girls happy during a very difficult time in their lives. That alone is worth it.
Now. The reason I'm blogging about this is that the bald Barbie "movement" is causing quite a stir in the media. Suddenly, there are news stories all over the place about childhood cancer. It started with the bald Barbie - they interviewed parents about it, asked their opinions, and so on. But it has turned into something more. Something kind of amazing. They are looking at the deeper issues - looking beyond the toy, and looking at the reason people feel there is a need for the toy.
Kids are suffering, and largely being ignored by our society. And the media is starting to pick up on that. No matter where the bald Barbie thing ends up - if Mattel makes it, or if they hold their ground and say no - it has raised awareness. It has made people think. And that is good. Very good.
I've quoted stats about a gazillion times before, so I'll spare you that. Suffice it to say that childhood cancers get next to no research funding, whereas numerous adult cancers get the lion's share. I read something the other day that really hit the nail on the head for me as to WHY that is so bothersome to me.
A little history on what I'm going to quote here: American Cancer Society wrote an article about why the bald Barbie was a bad idea. In it they said childhood cancer is "exceedingly rare." This angered a LOT of people because it trivializes what we're going through, and also because cancer is the number one cause of death by disease in children, so exceedingly rare is a pretty harsh way to describe it. The next day, they removed it from their website, and posted an apology. People Against Childhood Cancer (PAC2) wrote this response to it.
My favorite quote from PAC2's response is this: "America is simply not putting its best foot forward in saving our children from childhood cancers - the leading cause of death by disease for children.
In every other human endeavor our society strives to first protect the young, the innocent, the vulnerable: our children. Yet children battling cancer are virtually ignored."
They go on to tell this story: "In 1852 the British frigate H.M.S. Birkenhead sailed from Ireland with 638 people on board, including 20 women and children. It struck a rock and began to sink. The crew was unable to launch lifeboats to save all passengers and crew. If the entire crew tried to board the few working lifeboats, they would be swamped and all would be lost. Lieutenant-Colonel Seton commanded his crew to stand fast, for should they make for the boats, they would endanger the lives of the women and children. The Birkenhead broke up rapidly. In the tragedy 445 people lost their lives, yet all the women and children survived. The Birkenhead has secured a place in history due to the gallantry of her men, who, in the face of great danger, allowed the women and children to escape in the boats before trying to save themselves. Thus “The Birkenhead Drill” was born: Women and children first! And we know 13,500 moms of children that will be diagnosed with childhood cancer this year that would say to a child: “Take my place”."
I know I would take Matthew's place in a minute. I think it's wonderful that the media is picking up that particular message.
The other thing I saw that was particularly touching to me was a quote from Grey's Anatomy last night. They were preparing to operate on a child with Neuroblastoma, which is a cancer of the nervous system that only affects children. They said, "
I know a lot of you come here looking for updates on him - that really is the point of the blog, right? - so I'll give a quick update. He has had 2 days since his last chemo treatment, and yesterday it really wiped him out. He's tired, ornery and woke up at night in pain. Bone pain in his feet. This was a reminder of the last time we went through this type of treatment. I had forgotten, but 2 days after treatment is always the worst day for him. I'm glad there are only 3 more of these days until maintenance! He seems to be feeling better this morning, but is still a little bit grouchy. It'll probably escalate as the day goes on, and he'll need to rest. He'll feel better by the time the next treatment comes along.
Okay. Now I'm stepping on my soap box. If you're here to find out about Matthew, you could totally stop reading here and not miss a thing.
Wow, the childhood cancer community has blown up with media attention lately! It all started with the subject of a bald Barbie. There's a Facebook group that is growing exponentially that has banded together to convince Mattel to make a bald Barbie doll for children suffering from cancer and other illnesses that make you lose your hair - and also to help little girls cope when their mother loses her hair.
It seems like an innocent enough thing, but people have gone insane over it! It is definitely a hot topic, and a lot of my cancer mom friends have avoided weighing in on it at all. Like discussing politics or religion, you will never win.
I can see some of the points from both sides. The Facebook group seems to think this is how we will raise enough money to cure cancer, which is naive to say the least. IF they can convince Mattel to do this, and IF they are willing to donate proceeds, it certainly won't be ALL proceeds. Also, this doll will most likely only be attractive to families going through these events. Meaning it isn't likely to sell millions. Basically, it's not going to help the cancer community as much as these well-meaning individuals think it is.
But, I can't deny that I think a bald Barbie doll would be uplifting for some little girls I know. I could go online right now and find at least 3 pictures of little girls that I know personally who have recently lost their hair, and in these pictures, the girls are bald, and they are holding a Barbie who just got a matching hair cut. Some of the parents think the bald Barbie would only rub salt in the wound of something these girls will want to forget about as soon as they can. I can see that. And I can respect it. But for some of the girls, they're trying to embrace it, and the bald Barbies help them. I can't deny, though, that it's a landmine. I don't know if I'd have the guts to buy a bald Barbie for anyone's kid but my own, and of course, he wouldn't be interested anyway.
Anyway, another major point being made is that the people who oppose it say that it makes them ANGRY that any corporation would profit from the suffering of little girls. It brings out a lot of negative emotions tied to the whole pink phenomenon. Businesses have made so much profit from pink ribbon items made in honor of breast cancer. So much of that money goes into people's pockets, and not towards research. Charities have become greedy, and gone as far as suing one another because the names match too closely.
But, you can't deny that breast cancer has a lot of attention. It is also found a lot earlier now because women are aware of what to look for. The treatment has had a lot of research, resulting in new treatments, better treatments, and ultimately a better cure rate. 99%. That's sort of the Holy Grail of the cancer world.
So, in my mind, the bald Barbie could be the beginning of a little gold ribbon empire. Some of it will be icky, and opportunistic, and I'm not so naive as to think that businesses won't seek a way to profit from it. But even with all of that, I would be thrilled to walk into a Walmart on September (childhood cancer awareness month) 1st to a sea of gold ribbon items donating a portion of proceeds to childhood cancer research. Even if it is pennies on the dollar. It's still pennies that they didn't have for research before.
A lot of parents would rather see the money go straight to the charities that will use it ALL for research. So would I. I just don't think that's realistic in our society. You have to grab people's attention first. Plus, if I'm going to buy the item anyway, why not buy the same item with a gold ribbon, which would prompt the company selling it to make a donation, even if it's a tiny donation?
The way I see it, if I'm going to spend $20 on a Barbie just to turn around and cut off all its hair, I'd rather spend $25 on a Barbie that is already bald, and especially if Mattel will donate $5 or even $2.50 of that money to CureSearch. But if I'm looking for a good cause to spend $20 or $25 on, I would go straight to CureSearch.
When it comes right down to it, I don't think there's any harm in the bald Barbie, and I do think it could do some good. Not TONS of good, but some good. And it will make little girls happy during a very difficult time in their lives. That alone is worth it.
Now. The reason I'm blogging about this is that the bald Barbie "movement" is causing quite a stir in the media. Suddenly, there are news stories all over the place about childhood cancer. It started with the bald Barbie - they interviewed parents about it, asked their opinions, and so on. But it has turned into something more. Something kind of amazing. They are looking at the deeper issues - looking beyond the toy, and looking at the reason people feel there is a need for the toy.
Kids are suffering, and largely being ignored by our society. And the media is starting to pick up on that. No matter where the bald Barbie thing ends up - if Mattel makes it, or if they hold their ground and say no - it has raised awareness. It has made people think. And that is good. Very good.
I've quoted stats about a gazillion times before, so I'll spare you that. Suffice it to say that childhood cancers get next to no research funding, whereas numerous adult cancers get the lion's share. I read something the other day that really hit the nail on the head for me as to WHY that is so bothersome to me.
A little history on what I'm going to quote here: American Cancer Society wrote an article about why the bald Barbie was a bad idea. In it they said childhood cancer is "exceedingly rare." This angered a LOT of people because it trivializes what we're going through, and also because cancer is the number one cause of death by disease in children, so exceedingly rare is a pretty harsh way to describe it. The next day, they removed it from their website, and posted an apology. People Against Childhood Cancer (PAC2) wrote this response to it.
My favorite quote from PAC2's response is this: "America is simply not putting its best foot forward in saving our children from childhood cancers - the leading cause of death by disease for children.
In every other human endeavor our society strives to first protect the young, the innocent, the vulnerable: our children. Yet children battling cancer are virtually ignored."
They go on to tell this story: "In 1852 the British frigate H.M.S. Birkenhead sailed from Ireland with 638 people on board, including 20 women and children. It struck a rock and began to sink. The crew was unable to launch lifeboats to save all passengers and crew. If the entire crew tried to board the few working lifeboats, they would be swamped and all would be lost. Lieutenant-Colonel Seton commanded his crew to stand fast, for should they make for the boats, they would endanger the lives of the women and children. The Birkenhead broke up rapidly. In the tragedy 445 people lost their lives, yet all the women and children survived. The Birkenhead has secured a place in history due to the gallantry of her men, who, in the face of great danger, allowed the women and children to escape in the boats before trying to save themselves. Thus “The Birkenhead Drill” was born: Women and children first! And we know 13,500 moms of children that will be diagnosed with childhood cancer this year that would say to a child: “Take my place”."
I know I would take Matthew's place in a minute. I think it's wonderful that the media is picking up that particular message.
The other thing I saw that was particularly touching to me was a quote from Grey's Anatomy last night. They were preparing to operate on a child with Neuroblastoma, which is a cancer of the nervous system that only affects children. They said, "
Tuesday, January 17, 2012
What a Week!
WOW! This was a whirlwind of a week! All good. I thought I better update before I start to lose details.
After last week's fabulous counts, I took Matthew out to the daycare to visit. By the way, if any of you who are reading this, ever need a daycare in West Valley (and I think they have a West Jordan location), I could never recommend anything higher than I recommend Small World. Matthew stopped attending their center in July, but anytime we want to stop in and visit, they let us go to the rooms where the kids are, so that Matthew can play, they feed him, they have raised money for us, and they often have a bulletin board up as a tribute to him. 4 employees from the daycare came to visit Matthew in the hospital, and one of them comes to our house every week to teach him pre-school lessons. All of this, even after they no longer make any money from us. I LOVE them. They are not just a business, they are family, and they care so much for the kids there. Given the choice between them and any daycare, preschool, or private school in the valley, I'd take Matthew back there in a heartbeat.
Anyway, our visit to the daycare was eventful. I'm so squeamish about crowds of kids, because they share things from one kid's mouth to another, and they don't think about germs. A four year old rarely understands that they really shouldn't cough in another kid's face. And daycares are notorious for being germ factories. So, I was nervous to go, but knew Matthew really needed it, and I have to trust that when they say counts are up, he can fight things off, even if he is exposed to something.
When we got there, Matthew had brought a toy harmonica with him. He has been wanting to show it to his friends for months. He was so excited to show them. And they were excited to see it. They shared it. All of them. Just as it was headed for Matthew's mouth, I asked the teacher to take it away. I'll boil it later.
At first, the kids took a minute to recognize Matthew. He does look a lot different. He's taller and bald. But once they realized it was him, they had a really good time playing. Soon, it was lunch time. I didn't want to feed Matthew lunch there (even though they offered) because of germs. I preferred not to feed him from a large serving of food. So, we went downstairs to visit some of the other teachers, who he loves. When the kids were done with lunch, we prepared to go back up into his old class, but they told me one of the kids had thrown up at lunch. I wanted to scoop him up and leave right then, but I stayed calm. They put him into another classroom, and sent his best friend there to join him in playing. He had a great time!
When he was done, it was like a switch had been turned. He went from happy to wanting to go home in a second. He wouldn't talk to anyone, wouldn't give goodbye hugs, and wouldn't even say goodbye. I felt bad. But he had a great time up until then. These teachers are saints for letting me add to their classroom numbers, and then letting me watch while he plays.
That afternoon, I took Matthew to the Tracy Aviary with his cousins, Kyndra and Abby, and my Sister-in-Law, Andrea. We had a great time! It was COLD! But Matthew liked seeing the birds, and even more, he liked being outside and breathing fresh air, and running around with his cousins.
That day, Justin and I decided to go on an impromptu trip. We needed to get away, so we took advantage of Matthew's good counts, and we went to Vegas for the weekend. 3 nights and 4 days of desperately needed solace. We mostly hung around the hotel, but we did get to have dinner with Justin's step-brother and his wife. That was a lot of fun. And we saw one show. The Tournament of Kings at The Excalibur, which is the hotel where we stayed. The rest of the time, we just relaxed. It was wonderful. Matthew was in good spirits the whole time we were gone, which tells me he was still feeling well.
Today, he started the fifth of his six phases of chemotherapy. Interim Maintenance II. He will get Methotrexate via IV infusions, and it will increase in dosage for four doses, which are ten days apart. The doctor said that although he's had this high of a dose before, he's starting higher this time, and since the doses will continue to increase, he will end at a higher dose than he's had before. He's much more likely this time to have problematic side effects, such as mouth sores (they don't sound so bad, but I've heard they're terribly painful, and they often cause kids to boycott food to the point that they have to get feeding tubes put down their noses), low counts which can lead to infections, fevers, etc...
He will also get IV Vincristine at each of his four appointments, and he'll get Intrathecal (in the spine) Methotrexate twice (today, and in a month).
Then, he'll have a 17 day break, and move into Maintenance.
We're almost there, baby! 56 more days.
After last week's fabulous counts, I took Matthew out to the daycare to visit. By the way, if any of you who are reading this, ever need a daycare in West Valley (and I think they have a West Jordan location), I could never recommend anything higher than I recommend Small World. Matthew stopped attending their center in July, but anytime we want to stop in and visit, they let us go to the rooms where the kids are, so that Matthew can play, they feed him, they have raised money for us, and they often have a bulletin board up as a tribute to him. 4 employees from the daycare came to visit Matthew in the hospital, and one of them comes to our house every week to teach him pre-school lessons. All of this, even after they no longer make any money from us. I LOVE them. They are not just a business, they are family, and they care so much for the kids there. Given the choice between them and any daycare, preschool, or private school in the valley, I'd take Matthew back there in a heartbeat.
Anyway, our visit to the daycare was eventful. I'm so squeamish about crowds of kids, because they share things from one kid's mouth to another, and they don't think about germs. A four year old rarely understands that they really shouldn't cough in another kid's face. And daycares are notorious for being germ factories. So, I was nervous to go, but knew Matthew really needed it, and I have to trust that when they say counts are up, he can fight things off, even if he is exposed to something.
When we got there, Matthew had brought a toy harmonica with him. He has been wanting to show it to his friends for months. He was so excited to show them. And they were excited to see it. They shared it. All of them. Just as it was headed for Matthew's mouth, I asked the teacher to take it away. I'll boil it later.
At first, the kids took a minute to recognize Matthew. He does look a lot different. He's taller and bald. But once they realized it was him, they had a really good time playing. Soon, it was lunch time. I didn't want to feed Matthew lunch there (even though they offered) because of germs. I preferred not to feed him from a large serving of food. So, we went downstairs to visit some of the other teachers, who he loves. When the kids were done with lunch, we prepared to go back up into his old class, but they told me one of the kids had thrown up at lunch. I wanted to scoop him up and leave right then, but I stayed calm. They put him into another classroom, and sent his best friend there to join him in playing. He had a great time!
When he was done, it was like a switch had been turned. He went from happy to wanting to go home in a second. He wouldn't talk to anyone, wouldn't give goodbye hugs, and wouldn't even say goodbye. I felt bad. But he had a great time up until then. These teachers are saints for letting me add to their classroom numbers, and then letting me watch while he plays.
That afternoon, I took Matthew to the Tracy Aviary with his cousins, Kyndra and Abby, and my Sister-in-Law, Andrea. We had a great time! It was COLD! But Matthew liked seeing the birds, and even more, he liked being outside and breathing fresh air, and running around with his cousins.
That day, Justin and I decided to go on an impromptu trip. We needed to get away, so we took advantage of Matthew's good counts, and we went to Vegas for the weekend. 3 nights and 4 days of desperately needed solace. We mostly hung around the hotel, but we did get to have dinner with Justin's step-brother and his wife. That was a lot of fun. And we saw one show. The Tournament of Kings at The Excalibur, which is the hotel where we stayed. The rest of the time, we just relaxed. It was wonderful. Matthew was in good spirits the whole time we were gone, which tells me he was still feeling well.
Today, he started the fifth of his six phases of chemotherapy. Interim Maintenance II. He will get Methotrexate via IV infusions, and it will increase in dosage for four doses, which are ten days apart. The doctor said that although he's had this high of a dose before, he's starting higher this time, and since the doses will continue to increase, he will end at a higher dose than he's had before. He's much more likely this time to have problematic side effects, such as mouth sores (they don't sound so bad, but I've heard they're terribly painful, and they often cause kids to boycott food to the point that they have to get feeding tubes put down their noses), low counts which can lead to infections, fevers, etc...
He will also get IV Vincristine at each of his four appointments, and he'll get Intrathecal (in the spine) Methotrexate twice (today, and in a month).
Then, he'll have a 17 day break, and move into Maintenance.
We're almost there, baby! 56 more days.
Tuesday, January 10, 2012
Good Counts
Today's entry is to update two things: 1) Matthew's fantastic counts, and 2) The fantastic new Home Health nurse.
This week has been great! We switched Home Health companies last week, and it has been the best decision we could have made! They assigned their lead pediatric nurse for the area to us, and a lot of my friends from my support group said the same nurse takes or took care of their kids. And they all love her. I do too, she's great! Most importantly, she's organized, and will take care of our pharmacy needs for me, and she's confident. One of the other aspects of her job is that she is the nurse liaison between nursing and pharmacy - so she helps them all work well together, so she really understands the way their pharmacy works. I can't say how much I appreciate all of this.
She doesn't just want to come to do the little extra things they don't do up at the clinic - she actually wants to be an active participant in his health care. She wanted to be sure I was comfortable in administering his medicine at home, and to help us deal with it in any way that was needed. She gave me her cell phone number and said I could call her any time - day or night.
Also, she was SUPER comfortable with a Port. She said Matthew's Port sticks out well, and is easy to access. She preferred her own needle for it, because she said she could see what she was doing better with it, but it was the same needle with a different top. I figure we'll give it a try. She knows what she's doing. I think it'll be okay.
All in all, I now feel very positive about Home Health care in general. What a huge weight off my shoulders!
So, the nurse that came out yesterday took a CBC (Complete Blood Count) to see what Matthew's counts are, and it came back with great news. His ANC (Absolute Neutrophil Count - the infection fighting white blood cells) is 1300! It was 0 a week ago, so this is wonderful news! He has 7 more days before he gets anymore chemo, so we get to have some fun. I'm going to take him to visit the daycare - his favorite place in the world. It should be a great week!
This week has been great! We switched Home Health companies last week, and it has been the best decision we could have made! They assigned their lead pediatric nurse for the area to us, and a lot of my friends from my support group said the same nurse takes or took care of their kids. And they all love her. I do too, she's great! Most importantly, she's organized, and will take care of our pharmacy needs for me, and she's confident. One of the other aspects of her job is that she is the nurse liaison between nursing and pharmacy - so she helps them all work well together, so she really understands the way their pharmacy works. I can't say how much I appreciate all of this.
She doesn't just want to come to do the little extra things they don't do up at the clinic - she actually wants to be an active participant in his health care. She wanted to be sure I was comfortable in administering his medicine at home, and to help us deal with it in any way that was needed. She gave me her cell phone number and said I could call her any time - day or night.
Also, she was SUPER comfortable with a Port. She said Matthew's Port sticks out well, and is easy to access. She preferred her own needle for it, because she said she could see what she was doing better with it, but it was the same needle with a different top. I figure we'll give it a try. She knows what she's doing. I think it'll be okay.
All in all, I now feel very positive about Home Health care in general. What a huge weight off my shoulders!
So, the nurse that came out yesterday took a CBC (Complete Blood Count) to see what Matthew's counts are, and it came back with great news. His ANC (Absolute Neutrophil Count - the infection fighting white blood cells) is 1300! It was 0 a week ago, so this is wonderful news! He has 7 more days before he gets anymore chemo, so we get to have some fun. I'm going to take him to visit the daycare - his favorite place in the world. It should be a great week!
Friday, January 6, 2012
Transfusion - Take Three
Matthew's transfusion went well yesterday. Justin reminded me that it was his third, when I really, honestly thought it was his second. I totally blocked out the second one. I still feel like it's a dream I can't quite remember. It was during induction - when we were all still in shock. It's funny how crisis can mess with your mind!
Anyway, yesterday went well. Matthew was mellow, which is rare. He enjoyed watching movies, playing video games, and playing with his new tablet (VTech Inno Tab). He was nervous about the blood, though, and watched it very intently as it went through the IV tube and into him. We had explained to him that he would be getting some blood through his port, and it would make him feel better. He took it to mean that he was going to get his own blood back, since they take so much of it out of him! Funny kid.
Today, he is like another kid! Happy and sweet. Before the transfusion, he was moody, and ornery. He had gotten to the point where he was being really mean - throwing things at people, and screaming at them. It was bad. Like steroid, roid rage, bad. It is amazing to me that one little bag of red blood cells can effect such a change in him.
This picture is before the transfusion.
The following two are after:
I don't know if you can tell a difference or not in the pictures, but boy, could I when I was there with him. I could actually see the pink coming back into his cheeks - it looked sort of streaky and spotty at first.
Notice the Doritos? I'm shaking my head right now. But he hasn't had any in a few days, so he deserved it at clinic. His port access was particularly rough yesterday - he was bucking, and a nurse and I had to hold him down while another nurse accessed the port. Poor kid.
On the bright side, I've successfully switched home health care companies. I talked to the new nurse on the phone today, and she sounds great. I mentioned it to my support group on Facebook, and one of the other kids has the same nurse. His mom says we'll love her. I feel like an enormous weight has been lifted off my shoulders. I liked the other nurse a lot, but the whole situation was a mess. The new company manages all my inventory, so I have very little that I have to deal with, and the scheduling is much more professionally done. Plus, the new nurse does port accesses all day. I explained to her that Matthew has been traumatized by port accesses, and she is prepared to help him overcome that problem. I seriously was so happy when it was all said and done that I wanted to cry.
I know. Everything makes me cry. But at least this was a good cry!
Also, at the clinic yesterday, I learned how to de-access the port. The benefit of this is that when the home health nurse comes for a blood draw, it will sometimes be for counts the day before treatments. Or sometimes it will be because I suspect he needs a transfusion. If she can leave the port accessed, then on the days when she comes that are followed with a clinic visit, he won't have to be accessed again. On the days when we aren't sure if there will be a visit or not the next day, she can leave him accessed, and if we end up not going, then I can just take it out. That REALLY freaked him out, but we talked a lot about it afterwards, and I think it'll be a good thing.
Have a great weekend, everyone! I'm gearing up for my big block of work. 14 1/2 hours of work in a 24 hour time period, every Friday and Saturday.
Anyway, yesterday went well. Matthew was mellow, which is rare. He enjoyed watching movies, playing video games, and playing with his new tablet (VTech Inno Tab). He was nervous about the blood, though, and watched it very intently as it went through the IV tube and into him. We had explained to him that he would be getting some blood through his port, and it would make him feel better. He took it to mean that he was going to get his own blood back, since they take so much of it out of him! Funny kid.
Today, he is like another kid! Happy and sweet. Before the transfusion, he was moody, and ornery. He had gotten to the point where he was being really mean - throwing things at people, and screaming at them. It was bad. Like steroid, roid rage, bad. It is amazing to me that one little bag of red blood cells can effect such a change in him.
What a precious resource!
This picture is before the transfusion.The following two are after:
I don't know if you can tell a difference or not in the pictures, but boy, could I when I was there with him. I could actually see the pink coming back into his cheeks - it looked sort of streaky and spotty at first.
Notice the Doritos? I'm shaking my head right now. But he hasn't had any in a few days, so he deserved it at clinic. His port access was particularly rough yesterday - he was bucking, and a nurse and I had to hold him down while another nurse accessed the port. Poor kid.
On the bright side, I've successfully switched home health care companies. I talked to the new nurse on the phone today, and she sounds great. I mentioned it to my support group on Facebook, and one of the other kids has the same nurse. His mom says we'll love her. I feel like an enormous weight has been lifted off my shoulders. I liked the other nurse a lot, but the whole situation was a mess. The new company manages all my inventory, so I have very little that I have to deal with, and the scheduling is much more professionally done. Plus, the new nurse does port accesses all day. I explained to her that Matthew has been traumatized by port accesses, and she is prepared to help him overcome that problem. I seriously was so happy when it was all said and done that I wanted to cry.
I know. Everything makes me cry. But at least this was a good cry!
Also, at the clinic yesterday, I learned how to de-access the port. The benefit of this is that when the home health nurse comes for a blood draw, it will sometimes be for counts the day before treatments. Or sometimes it will be because I suspect he needs a transfusion. If she can leave the port accessed, then on the days when she comes that are followed with a clinic visit, he won't have to be accessed again. On the days when we aren't sure if there will be a visit or not the next day, she can leave him accessed, and if we end up not going, then I can just take it out. That REALLY freaked him out, but we talked a lot about it afterwards, and I think it'll be a good thing.
Have a great weekend, everyone! I'm gearing up for my big block of work. 14 1/2 hours of work in a 24 hour time period, every Friday and Saturday.
Wednesday, January 4, 2012
Lab Results
I just got a quick response from the clinic (don't have full lab results, but the super important numbers) and I thought I'd share. Matthew is neutropenic right now - his ANC (Absolute Neutrophil Count) is 0. It hasn't been that low since he was diagnosed. So, he is at extreme risk of infection.
Also, his Hematocrit (a combination of counts that measures his red blood cells' ability to spread oxygen to the rest of his body) is 21.5. They usually transfuse at 24 or lower, so we'll be going in for a red blood transfusion tomorrow morning, first thing.
His platelets are 153, which is really just fine. That's what controls clotting - preventing bruising and bleeding. He doesn't need any platelets. So, we're good there.
Also, his Hematocrit (a combination of counts that measures his red blood cells' ability to spread oxygen to the rest of his body) is 21.5. They usually transfuse at 24 or lower, so we'll be going in for a red blood transfusion tomorrow morning, first thing.
His platelets are 153, which is really just fine. That's what controls clotting - preventing bruising and bleeding. He doesn't need any platelets. So, we're good there.
The New Year
So far, the new year has been good. Matthew had to have a blood draw today, and technically it was supposed to be yesterday, but there was another mix-up with the home health care company. I'm concerned that Matthew has low counts, but won't know for another hour or two, or maybe even until tomorrow morning. But the visit from the nurse to get the blood went well. She accessed his Port easily, drew the blood and de-accessed. This is what it should always be like. He was scared, but very happy when it was done.
He wanted to go get a happy meal at the happy meal store. He asks for them a lot, and then doesn't eat them. When he's out of treatment, he'll probably hate chicken nuggets for the rest of his life.
His mood has been really unpredictable the last few days, almost as if he were on steroids again. He's sleeping a few hours extra in the morning, too. But during the day, he has energy. It makes me think maybe he's just tired from the chemo working through him. Especially if there really was an extra dose. But in addition to that, I'm seeing a lot of bruises on him. They're small, and might just be normal 4 year old bruises, but it seems like there's too many of them to be explained like that. He looks pale, but his lips are still pink, so I'm not too worried about his red blood cells. The bruising would indicate low platelets, but I don't know if I think it's dangerously low. It's so hard to guess. I suppose that's why we are doing the CBC.
Today is Mikey's birthday, so we're really hoping to get counts back by 4, so we can decide if our celebrations will be at home or not. We want to go out for dinner, but we'll see.
More to come later, after we have some results.
He wanted to go get a happy meal at the happy meal store. He asks for them a lot, and then doesn't eat them. When he's out of treatment, he'll probably hate chicken nuggets for the rest of his life.
His mood has been really unpredictable the last few days, almost as if he were on steroids again. He's sleeping a few hours extra in the morning, too. But during the day, he has energy. It makes me think maybe he's just tired from the chemo working through him. Especially if there really was an extra dose. But in addition to that, I'm seeing a lot of bruises on him. They're small, and might just be normal 4 year old bruises, but it seems like there's too many of them to be explained like that. He looks pale, but his lips are still pink, so I'm not too worried about his red blood cells. The bruising would indicate low platelets, but I don't know if I think it's dangerously low. It's so hard to guess. I suppose that's why we are doing the CBC.
Today is Mikey's birthday, so we're really hoping to get counts back by 4, so we can decide if our celebrations will be at home or not. We want to go out for dinner, but we'll see.
More to come later, after we have some results.
Sunday, January 1, 2012
Quick Update
I haven't had a lot of time, but I thought I'd add a quick update. Matthew's fever stayed gone, so thankfully, we haven't had to go back up to the hospital. Also, his Port needle held up for the rest of the week, thank heavens! He's been so traumatized by the Port accesses these last few weeks that when the nurse finally took it out at the end of the week, his chin was quivering because he was so scared. Poor kid!
It still wasn't a super fantastic week, though. There was a mistake with Matthew's chemo, and that's very near the top of my list of worst fears! You just can't make mistakes with chemo!
It's complicated to explain, but I'll try and be clear. There were two weeks when Matthew got Ara-C (a new chemo) - this was the second half of Delayed Intensification. The Ara-C was administered by IV on Tuesday, Wednesday, Thursday, and Friday each week. Tuesday was his clinic appointment both weeks, so they administered the Ara-C there. So, the home health nurse had to come out Wednesday, Thursday and Friday for both weeks to administer the doses at home. Plus, she had to come out on Monday both weeks to place Matthew's Port needle and get a CBC (Complete Blood Count - to find out his numbers).
So - there were massive Port needle issues, which I have already blogged about. Basically, the needles kept bending. We figured out midway through week 2 that it was because the needles the pharmacy had sent us were not for a power port, which is what Matthew has. Apparently, it makes a difference. Once we got the right needles, the Port problems stopped. Part of the problem with the bent needles is that our home health nurse isn't comfortable with accessing a Port. Her first time was during this two weeks, with Matthew. She was very sweet, and when it finally worked, I think she was more relieved than I was. It was still really hard, though. On all of us.
Anyway, each week, the pharmacy sent new meds. There would have been 6 syringes that were pre-dosed with medicine each week, except that some of it ended up being administered at the hospital, because of the port problems. So, during week 1, we were given 3 Zofran (anti-nausea), and 3 Ara-C. The Ara-C was administered 2 out of those three times at the hospital instead, and we gave him oral Zofran instead. So, at the end of week 1, we had 2 leftover doses of Zofran.
The Zofran label says to give it with Ara-C, so at first, we thought there was left over Ara-C. I called the pharmacy, and talked with the pharmacist. We figured it out, and I told him that the next week, he should just send 1 Zofran, along with the 3 Ara-C.
The next week, I got 4 syringes, and didn't look at what they were. (never - ever again!)
On Thursday, the nurse pointed out that there was no more Zofran, and there was an extra Ara-C.
Now, I can't decide if the pharmacy sent 1 Zofran and 3 Ara-C like we talked about - and if so, then the nurse administered 2 Zofran and no Ara-C on Wednesday - OR - if the pharmacy sent 4 Ara-C and no Zofran.
After she left, I dug everything out of my sharps container (which I think may be illegal...) and I only found two empty syringes of each. There should have been 3 because of the one visit during week one. The only thing I can think of is that the nurse that administered that (a different nurse than our regular one - she was teaching our nurse about accessing a Port) may have taken it with her. She had a big nurses bag, and maybe used her own sharps container.
Anyway, what it boils down to is that we don't know. We had to decide if it was more dangerous to potentially miss a dose (which could change his good prognosis - maybe only marginally, but to me, ANY change is unacceptable) or to get an extra dose (which could be dangerous because this is a serious chemo, and could cause damage to his body if administered in too high of amounts.)
So, after lots of time on the phone with the pharmacy and the on call oncologist, they finally decided that because his dose is smaller than what they administer with some other types of cancer, it would be okay to give the last dose, knowing it was potentially an extra dose.
They gave it on New Year's Eve.
That was the last dose of chemo that will make Matthew lose his hair. Delayed Intensification is essentially over now. He has a chemo pill until Wednesday, and then it's recovery for a few weeks, during which he will probably need blood transfusions. But no more harsh drugs for a few weeks.
I think it was an oddly appropriate way to end 2011. Good riddance to the worst year ever. I'm glad to be starting the new year with the worst treatment phases behind us. It gives me new hope.
Happy New Year, everyone! We're looking forward to it with hopeful hearts.
It still wasn't a super fantastic week, though. There was a mistake with Matthew's chemo, and that's very near the top of my list of worst fears! You just can't make mistakes with chemo!
It's complicated to explain, but I'll try and be clear. There were two weeks when Matthew got Ara-C (a new chemo) - this was the second half of Delayed Intensification. The Ara-C was administered by IV on Tuesday, Wednesday, Thursday, and Friday each week. Tuesday was his clinic appointment both weeks, so they administered the Ara-C there. So, the home health nurse had to come out Wednesday, Thursday and Friday for both weeks to administer the doses at home. Plus, she had to come out on Monday both weeks to place Matthew's Port needle and get a CBC (Complete Blood Count - to find out his numbers).
So - there were massive Port needle issues, which I have already blogged about. Basically, the needles kept bending. We figured out midway through week 2 that it was because the needles the pharmacy had sent us were not for a power port, which is what Matthew has. Apparently, it makes a difference. Once we got the right needles, the Port problems stopped. Part of the problem with the bent needles is that our home health nurse isn't comfortable with accessing a Port. Her first time was during this two weeks, with Matthew. She was very sweet, and when it finally worked, I think she was more relieved than I was. It was still really hard, though. On all of us.
Anyway, each week, the pharmacy sent new meds. There would have been 6 syringes that were pre-dosed with medicine each week, except that some of it ended up being administered at the hospital, because of the port problems. So, during week 1, we were given 3 Zofran (anti-nausea), and 3 Ara-C. The Ara-C was administered 2 out of those three times at the hospital instead, and we gave him oral Zofran instead. So, at the end of week 1, we had 2 leftover doses of Zofran.
The Zofran label says to give it with Ara-C, so at first, we thought there was left over Ara-C. I called the pharmacy, and talked with the pharmacist. We figured it out, and I told him that the next week, he should just send 1 Zofran, along with the 3 Ara-C.
The next week, I got 4 syringes, and didn't look at what they were. (never - ever again!)
On Thursday, the nurse pointed out that there was no more Zofran, and there was an extra Ara-C.
Now, I can't decide if the pharmacy sent 1 Zofran and 3 Ara-C like we talked about - and if so, then the nurse administered 2 Zofran and no Ara-C on Wednesday - OR - if the pharmacy sent 4 Ara-C and no Zofran.
After she left, I dug everything out of my sharps container (which I think may be illegal...) and I only found two empty syringes of each. There should have been 3 because of the one visit during week one. The only thing I can think of is that the nurse that administered that (a different nurse than our regular one - she was teaching our nurse about accessing a Port) may have taken it with her. She had a big nurses bag, and maybe used her own sharps container.
Anyway, what it boils down to is that we don't know. We had to decide if it was more dangerous to potentially miss a dose (which could change his good prognosis - maybe only marginally, but to me, ANY change is unacceptable) or to get an extra dose (which could be dangerous because this is a serious chemo, and could cause damage to his body if administered in too high of amounts.)
So, after lots of time on the phone with the pharmacy and the on call oncologist, they finally decided that because his dose is smaller than what they administer with some other types of cancer, it would be okay to give the last dose, knowing it was potentially an extra dose.
They gave it on New Year's Eve.
That was the last dose of chemo that will make Matthew lose his hair. Delayed Intensification is essentially over now. He has a chemo pill until Wednesday, and then it's recovery for a few weeks, during which he will probably need blood transfusions. But no more harsh drugs for a few weeks.
I think it was an oddly appropriate way to end 2011. Good riddance to the worst year ever. I'm glad to be starting the new year with the worst treatment phases behind us. It gives me new hope.
Happy New Year, everyone! We're looking forward to it with hopeful hearts.
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