...but I graded homework for two hours tonight and I don't have anything else.
We got out last night and had a nice night here tonight. Amie is on IV fluids tonight, and Anya is asleep in her bed. We're vegging on the couch.
Tomorrow is two separate events, if anyone is interested.
First is the Mexican Dinner at the Monroe Boat Club, generously hosted by Manuel and Nancy Barbosa.... long, long, long time friends of my parents.
Link for more information: http://www.facebook.com/events/426954797370499/
Also, tomorrow is Belleville WinterFest, in which some people are hosting a booth to support us as well.
Link for more information: http://www.facebook.com/events/215620068569867/
For those of you interested about Winterfest, it kicks off around 3p, and will include a winter parade with lighted floats and the such. Should be a nice time. Anya and I will be there from 4-6ish.
Night all!
Friday, November 30, 2012
Tuesday, November 27, 2012
Struggle and Vulnerability at 1:42am
It's 1am, and there has just been so many interruptions to everyone's sleep tonight. Of course, this makes it hard for me to get back to sleep.
I've been musing on the idea of strength. If I've talked to you about this before, bear with my faulty memory. For those of you who don't know, Shelley is a therapist, and she works mainly with clients who have what they refer to as co-occuring disorders, in that they have problems with substance abuse and mental health at the same time.
In that vein, Shelley has been engrossed with the research of a Social Worker out of the University of Houston named Brene Brown...and strangely I have too. Her work deals with the idea of shame and vulnerability, and how the so much of who we are and the choices we make are tied up into those two ideas. (I HIGHLY recommend listening to her two TED talks that are on the splash page when you click through that link.)
I'm thinking of how vulnerable and strong Shelley has been through this whole process. Her entire life has been completely unraveled, much like one of her sweaters that she so gorgeously knits.
I've been musing on the idea of strength. If I've talked to you about this before, bear with my faulty memory. For those of you who don't know, Shelley is a therapist, and she works mainly with clients who have what they refer to as co-occuring disorders, in that they have problems with substance abuse and mental health at the same time.
In that vein, Shelley has been engrossed with the research of a Social Worker out of the University of Houston named Brene Brown...and strangely I have too. Her work deals with the idea of shame and vulnerability, and how the so much of who we are and the choices we make are tied up into those two ideas. (I HIGHLY recommend listening to her two TED talks that are on the splash page when you click through that link.)
I'm thinking of how vulnerable and strong Shelley has been through this whole process. Her entire life has been completely unraveled, much like one of her sweaters that she so gorgeously knits.
- She has a daughter who suddenly has brain cancer.
- She has to give her older daughter to someone else to raise for days/weeks at a time.
- She has to give up her job, that she has worked for over 10 years to establish herself.
- She has to risk losing her certifications, and being grandfathered into certain laws, due to giving up her job.
- She has to deal with an at-times flaky husband who has some serious boundary issues with what he shares with the world.
- She has to repeatedly ask for help from many people, acknowledging her inability to do everything.
- She has to accept all of the above as being normal for now and not let it overwhelm her.
...and she does all of it with quiet grace, at least most of the time.
She said to me that she was really envious of my "escape" to school most days, in that I get to have a different life. Her life is now Amelie's illness, with occasional gentle forays into other things. Of course I immediately get all "high horse" on her in my head thinking of how I'd love to not be working... but know that among all the insanity that is teaching 8th grade in my school district, she is right that I get to have an adventure that is denied her. Among all my daily failures and frustrations in doing something brand new after years of success, I am at least on my own adventure.
She is locked into shepherding someone else on their adventure. Not that there aren't immense rewards in all of that, because there are. But she's on Amelie's (unwanted) adventure, and has to see it through to the end, wherever it leads her and us.
All of that leads me to think about how vulnerable that must make her in a world that tells women that to be considered successful you have to have healthy children, be perfectly slim and have an immaculately crafted exterior, work at a job that inspires/heals/creates/makes the world a better place, and make an appropriately suitable home for your husband. She has basically had to give up her ability to make all of the above a priority.
On top of all that, she's had to embrace her emetophobia, and be strong as Amelie pukes on her at times. She has to embrace letting Amelie watch more TV right now than Anya watched before she was 4. She has to watch them pumping deadly, toxic chemicals in Amie's body while knowing that she was previously concerned about organic vegetables.
I say all of this as a dramatic and overwhelming love letter to Shelley, as I sit awake at 1:42am.
So, Shelley as you sleep the sleep of the overwhelmed and exhausted in your own bed... I love you for being able to embrace all of this with the spirit and energy that you have, and know that I am beyond lucky to have you to go through all of this with.
Night all.
Monday, November 26, 2012
Fist Pumping Babies!
Greetings and Salutations to one and all, the blogster has returned.
As we last detailed on Wednesday, we didn't start Chemo last week, so we had a week(ish) to get Amie to love her some food, and spend some time as a family. We did this to our best extent...now the documentation.
I posted this on FB a few days ago as a Thanksgiving greeting from Amie, but wanted to include it here for those that are not on FB. We have been making her whatever she wanted to eat, and she said she wanted "browns" which are mini-tater tots that Shelley just adores as replacement hash browns. She always wants her "dip dip" for them, which is Ketchup. Scrunchy Face of course makes it perfect.
We knew that Anya wanted to do normal Thanksgiving stuff, but that Amelie really ought not go out and about. So my sister took Anya for a few days to do Thanksgiving with my parents, and then hang with the Garzas for a few days. This was them on the way to see Rise of the Guardians, which she enjoyed.
Auntie Beth and Anya doing their best imitations of me. I feel honored.
This is what it looks like outside my parents' house in Luna Pier, MI. Allyssa is a great big sister. :)
Amie likes to play on Anya's bunk bed...but knows that she can't do that without us. We wanted to send Anya a picture telling her that her bed was getting used well while she was gone.
This is Anya's room at Grammie's house. For those of you who don't know, this was Shelley's room growing up, so it's kinda cool for us that she gets to use it.
Anya was showing her cousins her room at Grammie's, and playing around in it. Yan Yee and Moy Moy really enjoyed it.
This is one of Amie's pillows that she's using. She loves it. Have you seen Coraline though?
This is Amie tonight, as she was about to start round 3 of Chemotherapy at Mott. This was totally spontaneous. I can't help but think this is a lot like the internet meme picture that has been floating around a while...
I've been asked to let y'all know that anyone desiring wristbands, T-shirts, or to just have a grand old time should check out Belleville WinterFest this Saturday. (click the link for details) There's going to be a booth for those that are doing stuff to support us, of which we are infinitely humbled. I'm going to do my best to come by and say hey at some point. They're good peeps.
Medical details:
Amelie's counts were good enough, and she was hydrated enough, for us to start round 3 tonight. The word still isn't official on rounds 4 and 5, but most likely we'll stay with the same levels of doses from rounds 1-3, due to the insurance denial. Dr. Yanik, the pediatric oncologist we're working with says this isn't a big deal, as the evidence that is going to be publish indicates that there's very little efficacy to doing both rescue rounds, even though we have enough to do about 5 infusions. Such is life...
The first "post-chemo" MRI is coming up on December 12th. This will tell us if/how much the cancer is coming back. Hoping for a nice clean bill of health on that one.
More to come in the days ahead. I'm staying there tomorrow night.
Time to work on Sub Plans for Wednesday!
Wednesday, November 21, 2012
Shelley + Jason = Lots of Words!
This is Shelley's post:
So, as Jason posted last night Amie was not admitted for her third round of chemo yesterday. Her ANC (absolute neutrophil count), part of her white blood count, the part that helps to fight infection, was too low for them to have her start chemo. Her platelets were also low, so we stayed for a blood transfusion before we came back home (the low platelets alone and the need for the blood transfusion would not have caused them to delay chemo.)
Amie was in good spirits and has been for the last few days, so the news that her counts were low really caught us off guard. Someone asked me what this means in the big scheme of things and the way it has been explained to us is that the longer Amie’s body has to recover from the previous round of chemo the longer the cancerous cells also have to recover and grow.
There was other news yesterday that we got that makes the delay feel even harder. About 2 weeks ago, we were carboned a letter from our insurance company saying that they were denying the pre-approval for the tandem stem cell rescue. This is the treatment that Amie’s doctors have laid out for us from the beginning. This was recommended based on a study that had just closed at U of M, where that the last three rounds of chemo be mega doses and that for her body be able to survive them that she would be given her own stem cells back in a transplant/rescue.
I was able to talk with Dr. Mahar yesterday for a while about the denial. He said that he’d spoken with the insurance company for about 2 hours during 3 conversations and that although they were very knowledgeable about the study at U of M and others going on they did not consider it to have proven results since none of the studies have yet been published. Dr. Mahar consulted with the team who is doing the current research and although their data has not been yet published and the statistics were still being worked out, the results are that the 3 rounds of treatment were “a shade of grey” different in recovery. He said it was definitely less that 10% of an improvement and much more likely 2-3%. The insurance company was willing to approved one round of the stem cell rescue, which has been a course of treatment that has been done for some time now. (As a total side note I asked about the costs of the rescue procedure and he put it in the $50,000- $100,000 for each round.)
These two pieces are what made yesterday so hard for me. Jason commented on this once before when talking about being discharged from the hospital. We have so little control over anything in our lives right now (at least the big stuff) and when the things I think are going to happen don’t, it’s really hard to wrap my brain around accepting them and moving along.
The new treatment plan at this point is that we will continue with 6 rounds of chemo, the first 5 being the same and then the final one being the massive dose of chemo and the stem cell rescue. There will be one of the three chemo drugs that will change (to a less effective drug) at some point along the way when it causes a significant loss of hearing for Amie. We are told that it is unlikely that she will lose hearing necessary for speech during round three, but that is a possibility. They will continue to test her hearing after each round of chemo. They have told us that it is “common” that children’s hearing is impacted enough to require hearing aids due to chemo and that if she requires radiation in the future that the impact would also be compounded by that.
Jason's contributions start here:
There's more that we can share, but its not time for that.
My parents came out to see the kids today, and they played with them while we went out to eat.
Do you know how hard it is to have a conversation about anything else other than cancer or the kids themselves?
Anyway, Anya went with them tonight and will spend Thanksgiving with my parents and my sister for Friday. We'll grab her on Saturday morning, and Amelie will have our undivided attention for a few days. Anya will get the fun and excitement of the Strzalkowski/Garza clan.
We're going to re-charge, re-fill and re-whatever and see how much we can fill our bucket over the break, and see what we can have put together by Monday when we go back in to hopefully start Round 3 on Monday.
Onwards and upwards, right?
So, as Jason posted last night Amie was not admitted for her third round of chemo yesterday. Her ANC (absolute neutrophil count), part of her white blood count, the part that helps to fight infection, was too low for them to have her start chemo. Her platelets were also low, so we stayed for a blood transfusion before we came back home (the low platelets alone and the need for the blood transfusion would not have caused them to delay chemo.)
Amie was in good spirits and has been for the last few days, so the news that her counts were low really caught us off guard. Someone asked me what this means in the big scheme of things and the way it has been explained to us is that the longer Amie’s body has to recover from the previous round of chemo the longer the cancerous cells also have to recover and grow.
There was other news yesterday that we got that makes the delay feel even harder. About 2 weeks ago, we were carboned a letter from our insurance company saying that they were denying the pre-approval for the tandem stem cell rescue. This is the treatment that Amie’s doctors have laid out for us from the beginning. This was recommended based on a study that had just closed at U of M, where that the last three rounds of chemo be mega doses and that for her body be able to survive them that she would be given her own stem cells back in a transplant/rescue.
I was able to talk with Dr. Mahar yesterday for a while about the denial. He said that he’d spoken with the insurance company for about 2 hours during 3 conversations and that although they were very knowledgeable about the study at U of M and others going on they did not consider it to have proven results since none of the studies have yet been published. Dr. Mahar consulted with the team who is doing the current research and although their data has not been yet published and the statistics were still being worked out, the results are that the 3 rounds of treatment were “a shade of grey” different in recovery. He said it was definitely less that 10% of an improvement and much more likely 2-3%. The insurance company was willing to approved one round of the stem cell rescue, which has been a course of treatment that has been done for some time now. (As a total side note I asked about the costs of the rescue procedure and he put it in the $50,000- $100,000 for each round.)
These two pieces are what made yesterday so hard for me. Jason commented on this once before when talking about being discharged from the hospital. We have so little control over anything in our lives right now (at least the big stuff) and when the things I think are going to happen don’t, it’s really hard to wrap my brain around accepting them and moving along.
The new treatment plan at this point is that we will continue with 6 rounds of chemo, the first 5 being the same and then the final one being the massive dose of chemo and the stem cell rescue. There will be one of the three chemo drugs that will change (to a less effective drug) at some point along the way when it causes a significant loss of hearing for Amie. We are told that it is unlikely that she will lose hearing necessary for speech during round three, but that is a possibility. They will continue to test her hearing after each round of chemo. They have told us that it is “common” that children’s hearing is impacted enough to require hearing aids due to chemo and that if she requires radiation in the future that the impact would also be compounded by that.
Jason's contributions start here:
There's more that we can share, but its not time for that.
My parents came out to see the kids today, and they played with them while we went out to eat.
Do you know how hard it is to have a conversation about anything else other than cancer or the kids themselves?
Anyway, Anya went with them tonight and will spend Thanksgiving with my parents and my sister for Friday. We'll grab her on Saturday morning, and Amelie will have our undivided attention for a few days. Anya will get the fun and excitement of the Strzalkowski/Garza clan.
We're going to re-charge, re-fill and re-whatever and see how much we can fill our bucket over the break, and see what we can have put together by Monday when we go back in to hopefully start Round 3 on Monday.
Onwards and upwards, right?
Tuesday, November 20, 2012
Ultra-Short and to the point...
Tired, exhausted and emotionally beat up today.
Just a quick update to say that Amelie's blood count numbers were too low to start round 3 of chemo today.
They sent her home to heal up more, and they're going to re-check on Monday.
Yes, it's been 5 weeks of a 3 week cycle, but they say it's not horrible.
She gained a pound though! So that's good news.
Night!
Just a quick update to say that Amelie's blood count numbers were too low to start round 3 of chemo today.
They sent her home to heal up more, and they're going to re-check on Monday.
Yes, it's been 5 weeks of a 3 week cycle, but they say it's not horrible.
She gained a pound though! So that's good news.
Night!
Monday, November 19, 2012
Rip roaring and ready to go...back into the hospital?
Did you know that last night was the night Amie turned 2 and 1 month? Neither did I!
But that didn't stop us from having a much-delayed private invite only birthday party for Amelie, courtesy of the very tres cool Shelley.
Anya's been doing a great job making cards lately, with no help from us. She's writing from memory for the most part, but she's learning lots of words too. She is sounding through lots of stuff. Woo!
Amelie loved the cupcakes by the way. They were Dee-Vine.
I got home from work today and saw that Anya had this out. She successfully spelled out her entire name (minus the middle - Quinn) several times in front of me, without mistakes. (she did not have the puzzle frame to help, thank you. She's mastered that skill)
Most of the staff of my school can't even do that. (ooooh, burn!)
I just got done reading "An Abundance of Katherines" by John Green (thanks Jen!), the same author who wrote "The Fault in Our Stars". Both were great, but fault is the best of his so far. Anyway, the protagonist of Abundance is a kid who anagrams things all over the place. Reading about that made me want to anagram some, so here's my best shot with Anya's name.
Anya Strzalkowski = Lazy as a stork wink
Tonight's our last night home for a bit, so we had a movie night. Most of you don't know how little media our kids have encountered, so this is a REALLY rare thing. The girls of course wanted snacks.
Tonight Amelie ate:
- Popcorn
- Fruit snacks (x2)
- Ice Cream
- Mac and Cheese
- Peanuts
- Pineapple
- Toast
Apparently, all we need to do to get her to gain weight is to take a few weeks off chemo to get her appetite back. Hmmmm, there seems to be a problem with that logic, but I'll come up with what it is later.
I asked Shelley what our reading audience needed to know about us being admitted back into the hospital tomorrow, and she responded with some amazing duck lips and said "dunno, going in for chemo". So yeah, there ya go, from the duck lips of our fearless leader. Goin' in for Chemo!
As always, the updates pick up greatly when we're in the hospital, because....what else do I have to do than go slowly mad listening to a cacophony of beeps and other random noises.
Night!
Thursday, November 15, 2012
Shelley is Live on the blog! Again!
Hi all, it's Shelley posting tonight.
We didn't end up going in for the third round of chemo yesterday. They decided to delay it until next Tue., because of Amie's health. She's had IV fluids at night for the last three nights and wow what a world of difference it does for this little girl. I wish I could convince her to drink on her own during the day. At one point, I had 5 sippy cups in the fridge all with different beverages in my efforts to try to find something she'd want to gulp down, but in the end when she does have a sip or two she usually requests water (so much for my attempts to sneak a few extra calories into her).
Yesterday, while we were waiting for the doctor, we were practicing Amie saying her name. I taped it to share with you. (Yes, the chair making noise is so much more interesting than repeating everything that mommy says.)
So, today we were at home and it was so good to be home with both of my girls having a regular Mommy Day. So, I thought I'd share with you a peek into it. We had a lot of fun since Amie was feeling better than she has in the last two weeks.
Everyday we start of with watching this song together. The girls are both mastering the words and Amie does the best "strong" ever. Somedays it makes me cry but, it always helps me to focus on the present and making the best of each day that we have together.
And if it's a bath night, the evening is always closed with the girls playing "Tiny Baby".
(I had a cute video of Amie saying "goo goo, ga ga" and pretending to be a tiny baby but it showed a bit too much, so you'll have to just imagine our fun night time bath games.)
That's I have for you tonight. Thank you so much for all your prayers, thoughts, kindness and love that everyone has been pouring our way. I know that there are many days that they are the only thing that helps me make it through the day. It means so much to me.
Shel
We didn't end up going in for the third round of chemo yesterday. They decided to delay it until next Tue., because of Amie's health. She's had IV fluids at night for the last three nights and wow what a world of difference it does for this little girl. I wish I could convince her to drink on her own during the day. At one point, I had 5 sippy cups in the fridge all with different beverages in my efforts to try to find something she'd want to gulp down, but in the end when she does have a sip or two she usually requests water (so much for my attempts to sneak a few extra calories into her).
Yesterday, while we were waiting for the doctor, we were practicing Amie saying her name. I taped it to share with you. (Yes, the chair making noise is so much more interesting than repeating everything that mommy says.)
So, today we were at home and it was so good to be home with both of my girls having a regular Mommy Day. So, I thought I'd share with you a peek into it. We had a lot of fun since Amie was feeling better than she has in the last two weeks.
Everyday we start of with watching this song together. The girls are both mastering the words and Amie does the best "strong" ever. Somedays it makes me cry but, it always helps me to focus on the present and making the best of each day that we have together.
Then on to a little crafting...
It was Anya's first time using the low temp glue gun all on her own.
She was very careful and so proud to be doing it on her own.
Some colorful toes...Anya chose blue and Amie chose purple.
A little time outside
And if it's a bath night, the evening is always closed with the girls playing "Tiny Baby".
(I had a cute video of Amie saying "goo goo, ga ga" and pretending to be a tiny baby but it showed a bit too much, so you'll have to just imagine our fun night time bath games.)
That's I have for you tonight. Thank you so much for all your prayers, thoughts, kindness and love that everyone has been pouring our way. I know that there are many days that they are the only thing that helps me make it through the day. It means so much to me.
Shel
p.s. Mema (J's Mom) bought Anya stick on decals for her room. The room has been decal-ified. She loves it.
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