...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.
Tuesday, November 13, 2012
Just got back from a concert...
Greetings All.
I am beginning to type this at 11:50p on Tuesday night, as I've just gotten in from seeing Amanda Palmer in concert.
For those of you concerned with my abandoning, it was with full permission and support of Miss Shelley, as she knows how much school has been taking out of me as of late. Maybe it is the difference in middle school vs. high school, maybe the kids are changing faster than I am, or maybe it is all the stress of what's going on with Amelie, but I'm emotionally right now where I usually am in May. This is not a good thing.
So, I grabbed a ticket to see Amanda Palmer a few weeks ago, and went to see her. I've referenced her before on the blog, and can honestly say that I don't believe many of you would like her at first blush.
She's brash, she's loud, she's totally unconventional. She is a performance artist on top of being a musician. For all those reasons, she turns people off at first. But if you are willing to look beyond that, she's just overflowing with amazing things that I love....and things that I hope my daughters love and emulate as well.
She stands on stage tonight, feverish and wracked with a cold. She tells us this to start the concert, and then proceeds to give every single bit of energy and passion that she can muster for the next two straight hours. She fights through the hard stuff, and does what she knows will fill her up, and ultimately heal her.
The image above is from a song in which she was wearing a MASSIVE wedding train, and she sang the song while being crowd surfed across the audience. I can't think of many other artists who would so fully trust her audience to take care of her. Then to see an entire audience do just that. Wow.
She looks different. She doesn't respect any societal mandates about what a "woman" who is "beautiful" is supposed to look like. But she exudes beauty from the confidence she has in who she is. She pours herself out there for those that are willing to take a second look, and inspires all these people in the audience to be their true selves, and society's rules be damned.
She sings about things that push you, that expose you, but ultimately help you tap into stuff that you know is true, that you know you need to hear, but it's hard to hear.
These are lyrics from her song lost, and I hope you can see why I might find them particularly pertinent right now.
No one's ever lost forever
When they die they go away
But they will visit you occasionally
Do not be afraid
No one's ever lost forever
They are caught inside your heart
If you garden them and water them
They make you what you are
I am beginning to type this at 11:50p on Tuesday night, as I've just gotten in from seeing Amanda Palmer in concert.
For those of you concerned with my abandoning, it was with full permission and support of Miss Shelley, as she knows how much school has been taking out of me as of late. Maybe it is the difference in middle school vs. high school, maybe the kids are changing faster than I am, or maybe it is all the stress of what's going on with Amelie, but I'm emotionally right now where I usually am in May. This is not a good thing.
So, I grabbed a ticket to see Amanda Palmer a few weeks ago, and went to see her. I've referenced her before on the blog, and can honestly say that I don't believe many of you would like her at first blush.
She's brash, she's loud, she's totally unconventional. She is a performance artist on top of being a musician. For all those reasons, she turns people off at first. But if you are willing to look beyond that, she's just overflowing with amazing things that I love....and things that I hope my daughters love and emulate as well.
She stands on stage tonight, feverish and wracked with a cold. She tells us this to start the concert, and then proceeds to give every single bit of energy and passion that she can muster for the next two straight hours. She fights through the hard stuff, and does what she knows will fill her up, and ultimately heal her.
The image above is from a song in which she was wearing a MASSIVE wedding train, and she sang the song while being crowd surfed across the audience. I can't think of many other artists who would so fully trust her audience to take care of her. Then to see an entire audience do just that. Wow.
She looks different. She doesn't respect any societal mandates about what a "woman" who is "beautiful" is supposed to look like. But she exudes beauty from the confidence she has in who she is. She pours herself out there for those that are willing to take a second look, and inspires all these people in the audience to be their true selves, and society's rules be damned.
She sings about things that push you, that expose you, but ultimately help you tap into stuff that you know is true, that you know you need to hear, but it's hard to hear.
These are lyrics from her song lost, and I hope you can see why I might find them particularly pertinent right now.
No one's ever lost forever
When they die they go away
But they will visit you occasionally
Do not be afraid
No one's ever lost forever
They are caught inside your heart
If you garden them and water them
They make you what you are
So yeah, I loved seeing the show tonight.
I feel totally energized, refreshed and ready to go another few rounds with this boolsheet.
Thank you deeply and sincerely Shel.
Now I need to figure out how to hook you up!
ps. I guess I owe you Amie details too. I'll know more in the morning when I talk to Shel, once she goes to the hospital to get her labs drawn. We were scheduled to be admitted to start Chemo tomorrow, but I don't think it's happening. We'll see.
Sunday, November 11, 2012
Picture Mania, as we are being PosITive!
We made a choice today to have a fun day, to do fun stuff.
We figured that if we weren't willing to dive back into the pool of "Life is good", like our shirts and hats say, then no one else was going to lead us there. The weather was great, the sun was warm, and the kids were lusting for outside. We helped them get there.
We were outside all morning, with Anya riding her balance bike. She's definitely going to be ready for a traditional bike when we get past this winter. She's on fire with the balance bike, which is just great to see.
After the morning, we came back in for lunch and naps. While Amelie was sleeping, I was waylaid with some medical play, or "doctor up" as Amelie would say.
Anya took good care to me. I told her that I had been run over by a herd of elephants, and needed some mending on my leg.
After naps, we were back outside. We wanted to get a new set of pics with Amelie, because the chance of her getting an NG tube soon is very, very high. They said once she loses 10% of her body weight, they'd be looking to do some sort of intervention. She's pretty much there right now, with maybe .25% to go.
When I looked at this, I thought immediately that Amelie was doing some sort of soft shoe tap routine on the grass. "Hey Everyone! It's Jazzzzzzzz......."
Look! There's land over yonder!
Shelley has been operating at 5% or less for a few days now. I thought she might need an aventure.
After the pictures, I hurried them into the car, and packed everyone in my plans.
Shelley says the words about liking surprises, but has this anxious asking questions thing that belies her uncomfortableness with spontaneity.
(She says that me saying that she isn't spontaneous is really not nice. She says my ideas are sometimes kinda insane, and that she worries about the safety of the children and herself when I come up with my harebrained ideas. She probably has some traction here, but I still have the right to completely ignore her concerns and fly headlong into whatever mad, mad plans I have...)
(She says that me saying that she isn't spontaneous is really not nice. She says my ideas are sometimes kinda insane, and that she worries about the safety of the children and herself when I come up with my harebrained ideas. She probably has some traction here, but I still have the right to completely ignore her concerns and fly headlong into whatever mad, mad plans I have...)
The girls thought this idea was very, very good.
Amelie (I keep thinking of her as Orange Smurf with that hat) loved the unending supply of ice cream we were throwing at her.
Anya too...but Anya talks so much she doesn't get much ice cream into her mouth.
Eat more, talk less.
Amie looks so profound. As though the ice cream has brought her to a point of divine revelation. Yes....chocolate peanut butter does = Angels in your mouth.
Amie was enjoying playing on the playset in the park in Howell.
Thought y'all might want to see how the surgery scar is healing.
Finally, here's the girls helping each other to enjoy a moment on the slide.
It's totally indicative of how they play most of the time.
Anya gets a bit bossy at times, but they really support each other.
That's about it for tonight. Going to disconnect and watch The Amazing Race.
Night All!
Saturday, November 10, 2012
If you don't have anything nice to say...
It is Saturday night.
All the girls have been sleeping for.....an hour or so.
It is time I jumped on this horse and took a mosey, don't you agree?
I try to be adhering to the whole idea that "be nice, or shut up", or the better way of phrasing it that is the title to this blog post. Sometimes I succeed, sometimes I don't. I really do try though.
Last night I started blogging and it was just bile and hurt and pity and all other sorts of fecal matter. I had been on the phone with my work wife (former work wife? separated work wife? ....what's the term when you no longer work in the same building, but used to be simpatico work partners?) and my sister for a bit, and I was just getting sadder and sadder.
I'm lacking in details, and I know it, but I'm rambling towards a point. really!
Shelley said tonight that she's shocked that she's still able to be shocked on this journey, and that's how we both are. How can we still be shocked to hear stuff that rocks us on our heels?
So, details.
The oncology team has told us repeatedly that one of the side effects of the Chemo regimen that we're on can be hearing loss. For us, it was a statement that was roughly like those horrific disclaimers on TV ads for anti-(something) meds, where you're suffering from mild heartburn and one of the possible side effects of taking the drug is that your skin will fall off and you'll suffer brain bleeding migraines. You know that it won't happen to you, but they have to warn you nonetheless.
Well, we learned that Amie is losing (permanently) hearing already because of her chemotherapy. At this point, it's only in the 8,000 to 10,000 (hertz?) range. This is the range of sound that falls in the dog whistle range. For now it's a good thing she's not a dog. However, it will continue to get worse, and it will be permanent.
We totally know that brain cancer has permanent effects, but the permanency of the now, of the right now, of the right now and forever and ever amen kind is somehow different. The idea that no matter what happens, her hearing is going to be diminished even if she comes out of this 100% from here out is a weird thing to accept. It's still soaking in.
Other than that, the new infusion of chemo seems to have really shot her down the "not doing great tube", and she's most likely not going to start round 3 of chemo this week, and will get it delayed a week. That means it will start on Thanksgiving eve. Luckily, being the vegetarians that we are, it's no big culinary loss.
On the positive side, Beth and Allyssa came out today, and rocked the girls' worlds. Shel and I got to get out and play! We went to a bookstore, drank coffee, browsed, and acted like things were normal (or close to normal as we can imagine). It was surreal and fun and amazing...
...and with that I need to get to sleep. Been a long day, and the girls will be up at 5am, no matter if I want them to or not.
Have a good night all.
All the girls have been sleeping for.....an hour or so.
It is time I jumped on this horse and took a mosey, don't you agree?
I try to be adhering to the whole idea that "be nice, or shut up", or the better way of phrasing it that is the title to this blog post. Sometimes I succeed, sometimes I don't. I really do try though.
Last night I started blogging and it was just bile and hurt and pity and all other sorts of fecal matter. I had been on the phone with my work wife (former work wife? separated work wife? ....what's the term when you no longer work in the same building, but used to be simpatico work partners?) and my sister for a bit, and I was just getting sadder and sadder.
I'm lacking in details, and I know it, but I'm rambling towards a point. really!
Shelley said tonight that she's shocked that she's still able to be shocked on this journey, and that's how we both are. How can we still be shocked to hear stuff that rocks us on our heels?
So, details.
The oncology team has told us repeatedly that one of the side effects of the Chemo regimen that we're on can be hearing loss. For us, it was a statement that was roughly like those horrific disclaimers on TV ads for anti-(something) meds, where you're suffering from mild heartburn and one of the possible side effects of taking the drug is that your skin will fall off and you'll suffer brain bleeding migraines. You know that it won't happen to you, but they have to warn you nonetheless.
Well, we learned that Amie is losing (permanently) hearing already because of her chemotherapy. At this point, it's only in the 8,000 to 10,000 (hertz?) range. This is the range of sound that falls in the dog whistle range. For now it's a good thing she's not a dog. However, it will continue to get worse, and it will be permanent.
We totally know that brain cancer has permanent effects, but the permanency of the now, of the right now, of the right now and forever and ever amen kind is somehow different. The idea that no matter what happens, her hearing is going to be diminished even if she comes out of this 100% from here out is a weird thing to accept. It's still soaking in.
Other than that, the new infusion of chemo seems to have really shot her down the "not doing great tube", and she's most likely not going to start round 3 of chemo this week, and will get it delayed a week. That means it will start on Thanksgiving eve. Luckily, being the vegetarians that we are, it's no big culinary loss.
On the positive side, Beth and Allyssa came out today, and rocked the girls' worlds. Shel and I got to get out and play! We went to a bookstore, drank coffee, browsed, and acted like things were normal (or close to normal as we can imagine). It was surreal and fun and amazing...
...and with that I need to get to sleep. Been a long day, and the girls will be up at 5am, no matter if I want them to or not.
Have a good night all.
Thursday, November 8, 2012
Guest Post......starring Miss Shelley!
Hi! It’s Shelley here doing a guest post for J who is totally swamped with school stuff right now. I’m not nearly as entertaining as J, but at least I can update you all on the last few days.
Since Amie discharged from the hospital two Sundays ago we’ve been going Mon., Wed., and Fri. to the hospital for blood draws and transfusions. The platelet transfusions only last 2-3 days and blood transfusions last for 7 days. So she had a blood transfusion on Sunday of two weeks ago and then again this Monday. She’s had platelet transfusions each time we’ve gone, except yesterday, when we got some happy surprise news that her counts were coming up and that she was healthy enough for the chemo that she gets between inpatient visits. If all continues to go as they think it will, she’ll be ready to go in next Wed. for her third round of chemo. This is great given that before her lab results came in Wed. they were anticipating that her counts would not be high enough for her next round of chemo until the day before Thanksgiving (not that we care about her being in the hospital during Thanksgiving, but the sooner she gets the chemo the less chance the cancerous cells are able to grow.)
We’ve had a mixture of days since J last posted. Some days Amie has been tired and wanting mostly to be held, refusing to eat and barely drinking anything. Other days have been much better, like yesterday when Amie, filled with joy, ran back in forth yelling “Amie RUN!” for several minutes to start the day off right. Today, she seemed really tired from the chemo yesterday, but still in good spirits.
I’ve been to the hospital every day this week. Some days we were only there two hours, but some were 8 hours long visits. The best way I can describe the long days is mind numbing. Amie needs 24/7 entertainment and attention. I’m unable to do anything (like read a magazine or even knit something simple) to help pass the time. I go from one entertainment trick to the next and by the time I get home, I am beyond worn out. Don’t get me wrong I’m grateful for every moment I spend with my little girl, but the hours at the hospital lack enjoying the moment and the flow of life at home.
Okay, enough chatter and on to the good stuff....
Since Amie discharged from the hospital two Sundays ago we’ve been going Mon., Wed., and Fri. to the hospital for blood draws and transfusions. The platelet transfusions only last 2-3 days and blood transfusions last for 7 days. So she had a blood transfusion on Sunday of two weeks ago and then again this Monday. She’s had platelet transfusions each time we’ve gone, except yesterday, when we got some happy surprise news that her counts were coming up and that she was healthy enough for the chemo that she gets between inpatient visits. If all continues to go as they think it will, she’ll be ready to go in next Wed. for her third round of chemo. This is great given that before her lab results came in Wed. they were anticipating that her counts would not be high enough for her next round of chemo until the day before Thanksgiving (not that we care about her being in the hospital during Thanksgiving, but the sooner she gets the chemo the less chance the cancerous cells are able to grow.)
We’ve had a mixture of days since J last posted. Some days Amie has been tired and wanting mostly to be held, refusing to eat and barely drinking anything. Other days have been much better, like yesterday when Amie, filled with joy, ran back in forth yelling “Amie RUN!” for several minutes to start the day off right. Today, she seemed really tired from the chemo yesterday, but still in good spirits.
I’ve been to the hospital every day this week. Some days we were only there two hours, but some were 8 hours long visits. The best way I can describe the long days is mind numbing. Amie needs 24/7 entertainment and attention. I’m unable to do anything (like read a magazine or even knit something simple) to help pass the time. I go from one entertainment trick to the next and by the time I get home, I am beyond worn out. Don’t get me wrong I’m grateful for every moment I spend with my little girl, but the hours at the hospital lack enjoying the moment and the flow of life at home.
Okay, enough chatter and on to the good stuff....
Amie wanted to dress up in Anya’s Dorothy outfit today for the first time and Anya (the awesome big sister she is) totally agreed and let her wear her costume. These little girls were having a good time.
and here is the scrunchy face we love
and if you care to hear a little of Amie’s rendition of “Somewhere over the Rainbow” here ya go...
Take Care All,
Shelley
Saturday, November 3, 2012
Some things change, some things....
After the last blog post, I made the executive decision to take a day off and get our affairs in order. Whether those were financial, personal, spatial, emotional, metaphysical or anything else, we felt like we were outa whack, and needed to center ourselves.
We had been given the heads up that we'd be admitted to the hospital after our blood draw on Friday, and we'd be in there the whole weekend again. Knowing that Anya would be with us on Thursday, and that we might not have all this togetherness for a while, it seemed perfect.
We decided to play around in the morning and then head to East Lansing to have a great meal at Altu's. This is a restaurant that I've been going to since 1996, and that I introduced Shelley to soon after we started dating in 2003. The owner Altaye Tadesse (Altu is what she goes by), greets us by name and is amazing. Her food is beyond perfect for us, and we could eat it daily.
Anyway, her restaurant keeps morphing...getting bigger, better, and more decorated. However, since the very first time that I went there with Karpy in 1996, she's had this print hanging in her men's bathroom.
It just made me smile in a really cool way. Things can change, but others stay the same way forever. I love having things I can really count on...like the print here, or the spicy lentils at Altu's, or the solace that I find in a perfectly darkened theatre for a movie that I've been waiting ages to see.
Before we headed to E. Lansing, we played around. I shot this video that morning. It's not the best, but it shows how silly and regular Amelie still is, even after all of this.
You can see, if you look again, how little hair she has, and how her incision is healing. She's lookin' aiight.
I loved this pic I grabbed as well.
So we had a great Thursday, and then ended the night falling asleep early.
Shelley went to the hospital, and we didn't get admitted the next day! It was like getting a giant snow day that lasted three days! Woo!
Last night, now that Amelie didn't have her port accessed at home and she wasn't restricted by the post-op rules, Amelie took a long luxurious bath, or at least as long as a two year old can get their head around.
Take a second to check out her port site. It was the clearest and most vivid imagery I've captured of it, for those of you who are curious.
Ok y'all. It's been a long day already (I worked on grades for 8 hours today. Want to get off the computer), so it's time to sign off. We have us some hanging out to do.
Woo!
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