Well, July is coming to a close, and our journey continues into August. School will start tomorrow. For Finley and Cadence, it will be back to life as usual (or as usual as it can be) and Harper will be learning all about home-bound school.
Its been 2 & 1/2 months since the diagnosis. It is absolutely amazing to me that that much time has gone by. I'm not sure we're having fun, but it's flying. The school year was just winding down when she first went into the hospital.
Harper continues her chemo. This round (and the next) are weekly treatments. Fortunately, the first week is the only inpatient stay, with week 2 & 3 (of a 3-week round) just an outpatient visit to the clinic, where they push in the vincristine (which is pretty much like her daily flushes). We'll be back inpatient the week after next.
It's a little tough knowing Harper will basically start falling behind tomorrow. She won't be getting the same instruction as all her classmates. I mean, I'm sure she'll be able to catch up later, but she's never shown as much enthusiasm for learning and school as Cadence, and I worry for her. I worry that staying home she won't learn as quickly.
I'm afraid there'll be too many distractions. I'm afraid it will be too easy for her to put off her work, or find something else to do. I know Melissa will be on her - with the TV and Harper's iPad off limits until she does her school work, but there will be bad days. There will be days, probably following chemo, or for a pretty long stretch after surgery, where we'll lay off her, and she'll slip farther and farther behind.
But then I think about what she is learning. I think about the skills, strengths and attitude that her other classmates aren't learning. I don't wish those lessons on them - but I can't help but ponder the advantages that she may have because of her experience.
She knows what it is to fear for her life, and rise above it, learning to enjoy it, despite the fear. She knows what it's like to submit to something that she knows will be unpleasant - that will hurt, and still do it willingly, because the benefit outweighs the pain. She knows that there are some things that, while we hate them, are worth doing because of the greater end goal - even if that end goal is not certain.
She knows things now that any parent would wish to prevent their child from ever knowing, and yet... And yet she is stronger for it. I've seen in her the growth of emotional strength beyond that which many adults could muster. Not constant, mind you, but there, and growing.
I've seen determination, and even confidence when faced with standing out in a crowd, because of her bald head - and yet she knows she is pretty - on the outside and especially on the inside. And she knows it not because we told her. She knows it because she told herself. I see it.
When this is over, and if she wins... No. No, I keep saying that wrong. I keep showing a weakness she herself doesn't show.
When this is over, and she wins - when she beats this terrible disease - when she beats the odds, she will go on in life a wiser, stronger, more intelligent and cunning young lady than any of her peers. Her prospects will be better than any of her friends, because she will have the skills, strengths, and learned lessons few others will be able to boast - and they will help her on her journey to something great.
I don't know what that great something will be. But I know she will be it. I know she will.
And a few days of 3rd grade missed will be nothing.
Back to school for most - but for Harper, she never really left it - she just moved up to an advanced class on life. And I see an amazing graduation in her future.
Wednesday, July 31, 2013
Thursday, July 25, 2013
On The Outside
From the outside, Harper looks so different. Not just from before all this started - but even since we left the hospital. Her hair is gone now (obviously), but her face has lost its grimace - and its been replaced by an almost constant smile. It's like someone just turned the world upside down from just a few weeks ago.
Another round of chemo is underway. Essentially, the part we think of as chemo (IV drips, monitoring, at the hospital or in the clinic) is really already done. Harper spent most of the last 2 days in the hospital, getting prepped for chemo, receiving chemo, and then getting fluids after. She only had to spend 1 night in the hospital, which we were prepared for 2. Bonus!
Next week, on Thursday, she'll get another dose of vincristine - just a simple "push" which is then just flushed after with saline. No fluids. No time in the clinic or the hospital, other than the actual pushing of the plunger on the syringe.
This "round" of chemo is much easier on Harper than the previous few. The last few have been 6 hours of infused fluids and chemo drugs each day for 4 days in a row. This is 1 big day, followed by 2 other tiny days, a week apart. Honestly, much preferred.
Now, we wait. We wait for the next round of CT scans. They'll probably be the week after next. Then the "tumor board" will review her case again - and we'll get more insight. We'll find out if her tumors are continuing to shrink. We'll get the low down on the tumors in her liver, which were not shrinking before. We'll get a better idea on surgery to remove the kidney.
I'm worried on the tumors continuing to improve. Based upon Harper's demeanor, and how far her mood has come, we hope that the overall condition is continuing to improve as well - but we don't know. She's been eating like a hungry, hungry hippo - but is that reason her abdomen looks bigger? Is she getting a little belly on her from extra calories? Or is it something else. Time will tell.
We went for a walk around the neighborhood tonight. She made it all the way around. She then stayed outside with us, as we pulled crabgrass out of the yard. She whined at the end, but only because she wanted to go inside and take bath. Just days ago, she fought us on the idea of a bath - now she's asking for one.
The turnaround continues - and we hope it is not just happening on the outside.
Thursday, July 18, 2013
Take The Next Hill
The war grinds on. We fight each battle for another small patch of land. The engagements can be brutal, but our objective remains clear - Complete Victory.
Next week is another big week. It seems they're all big weeks these days. In fact, each day is a big day. Each hill is steep. Considering where we've been, and the deep darkness we've come from, each day of sunshine feels brighter. The summer heat is warmer. The grass greener.
Next week will be round 4 of chemo. We'll be going back to the drug mix we started with in round 1, which requires a long infusion of a bladder protectant medication before, during and after the chemo. So, likely we'll be admitted. Maybe for just a day. Maybe longer. It's an adventure, right?
Harper says she doesn't really remember much from the 13 day hospitalization that started it all. Not a shocker, really, since her coping mechanism was to shut down emotionally. She slept. She kept her eyes closed. She laid in bed, losing her strength, not eating. She ignored the sounds of mortars falling toward her, desperate to be anywhere else - even if that meant being nowhere.
Today is so very different from then. Today she's active. Not the kid she was before, but she moves. She eats almost constantly (thank you Megace). She smiles, laughs, listens, holds conversations. She'll even talk about the cancer, and the surgery coming up to remove her kidney. Oh, how far we've come. Oh, how many hills we've taken. After initially giving so much to the enemy, we've slogged back, claiming land that is rightfully ours.
After this next chemo round, we'll be scheduling another CT scan to ascertain the status of her tumors. A reconnaissance flight, to spy on the enemy. If they have shrunk, then we'll be moving towards surgery. If they haven't, then we'll be considering options. I have no idea what those are, and I hope we don't have to consider them. I'm hoping we'll see the enemy's supply lines drying up, their resources dwindling - starving, dying off, running low on ammunition.
My big concern is the tumors in the liver. Last scan they hadn't shrunk like the tumor on her kidney or in the lungs. But they had "liquified" in their centers - hopefully a sign of tumor death. If so, hopefully we'll see improvement this time. Hopefully we'll see them retreating.
Her blood counts are good going into next week. Reds, whites and platelets. Her tanks are full. Her arsenal stocked.
So as the sun sets, and the warmer summer heat subsides outside tonight, we plan a relaxing, enjoyable weekend, before we're back to the battle again next week. A bit of leave, so to speak. A 3-day pass as it were. We're tiring a bit, but we know the war is far from over.
Next week, we'll be back on the line, fixed bayonets, taking the next hill.
Next week is another big week. It seems they're all big weeks these days. In fact, each day is a big day. Each hill is steep. Considering where we've been, and the deep darkness we've come from, each day of sunshine feels brighter. The summer heat is warmer. The grass greener.
Next week will be round 4 of chemo. We'll be going back to the drug mix we started with in round 1, which requires a long infusion of a bladder protectant medication before, during and after the chemo. So, likely we'll be admitted. Maybe for just a day. Maybe longer. It's an adventure, right?
Harper says she doesn't really remember much from the 13 day hospitalization that started it all. Not a shocker, really, since her coping mechanism was to shut down emotionally. She slept. She kept her eyes closed. She laid in bed, losing her strength, not eating. She ignored the sounds of mortars falling toward her, desperate to be anywhere else - even if that meant being nowhere.
Today is so very different from then. Today she's active. Not the kid she was before, but she moves. She eats almost constantly (thank you Megace). She smiles, laughs, listens, holds conversations. She'll even talk about the cancer, and the surgery coming up to remove her kidney. Oh, how far we've come. Oh, how many hills we've taken. After initially giving so much to the enemy, we've slogged back, claiming land that is rightfully ours.
After this next chemo round, we'll be scheduling another CT scan to ascertain the status of her tumors. A reconnaissance flight, to spy on the enemy. If they have shrunk, then we'll be moving towards surgery. If they haven't, then we'll be considering options. I have no idea what those are, and I hope we don't have to consider them. I'm hoping we'll see the enemy's supply lines drying up, their resources dwindling - starving, dying off, running low on ammunition.
My big concern is the tumors in the liver. Last scan they hadn't shrunk like the tumor on her kidney or in the lungs. But they had "liquified" in their centers - hopefully a sign of tumor death. If so, hopefully we'll see improvement this time. Hopefully we'll see them retreating.
Her blood counts are good going into next week. Reds, whites and platelets. Her tanks are full. Her arsenal stocked.
So as the sun sets, and the warmer summer heat subsides outside tonight, we plan a relaxing, enjoyable weekend, before we're back to the battle again next week. A bit of leave, so to speak. A 3-day pass as it were. We're tiring a bit, but we know the war is far from over.
Next week, we'll be back on the line, fixed bayonets, taking the next hill.
Tuesday, July 16, 2013
Little Things
Things happen. Life happens. Cancer happens. It sucks, I don't understand why it happens, but it does.
God won't give you anything you can't handle - or so some saying goes - or something similar. What do people know? We're just mortal, imperfect, often incorrect beings. How can we say for sure?
Big things happen. Diagnosis. Surgery. Chemo. Blood transfusions. CT scans that put us on pins and needles waiting to hear the results. Lots of big things. More big things than should be shoved into a single, short period of time.
But little things happen. A plate or bowl - emptied. A joke - laughed at. A smile - hidden, but there. An outlook - slowly brightening. A tooth - loose and then out. Anticipation of visitation from a fairy.
And then things happen close to home. A neighbor is in a horrible accident. His legs and feet crushed. His life and limbs spared miraculously, but pain ahead in recovery.
And things happen far away - to people you don't know. A little girl, who battled cancer for 6 years, touching millions with her makeup artistry and awareness spread through a celebrity - taken. A girl who would have been Harper's age when she was diagnosed. A girl who had a cancer of the adrenal glands - located eerily close to the kidney - where Harper's comes from. A girl who fought with an incredible optimism - that was unfortunately for naught except for her legacy of hope that remains.
And what can we do? Nothing. Despite any desire to hide, steal away, cover up and refuse to acknowledge - things happen. And they keep happening. Good. Bad. Things do not stop. They do not slow. Only with ever increasing speed do they seem to occur.
But - when we can, we stop. We stop and enjoy. Enjoy the steady breathing of a child asleep next to you. Enjoy the smile quickly smirked and then gone. Enjoy the weight on the scale - higher than last time. Enjoy the comment that, you know what, I don't feel like I'm going to die anymore. Enjoy the tooth hidden happily under a pillow.
Maybe we can or can't handle the Big things. We won't really know until they're over. Until then, I'm going to try my damnedest to keep reminding myself to try to enjoy the little things. Because sometimes the little things are all you've got.
God won't give you anything you can't handle - or so some saying goes - or something similar. What do people know? We're just mortal, imperfect, often incorrect beings. How can we say for sure?
Big things happen. Diagnosis. Surgery. Chemo. Blood transfusions. CT scans that put us on pins and needles waiting to hear the results. Lots of big things. More big things than should be shoved into a single, short period of time.
But little things happen. A plate or bowl - emptied. A joke - laughed at. A smile - hidden, but there. An outlook - slowly brightening. A tooth - loose and then out. Anticipation of visitation from a fairy.
And then things happen close to home. A neighbor is in a horrible accident. His legs and feet crushed. His life and limbs spared miraculously, but pain ahead in recovery.
And things happen far away - to people you don't know. A little girl, who battled cancer for 6 years, touching millions with her makeup artistry and awareness spread through a celebrity - taken. A girl who would have been Harper's age when she was diagnosed. A girl who had a cancer of the adrenal glands - located eerily close to the kidney - where Harper's comes from. A girl who fought with an incredible optimism - that was unfortunately for naught except for her legacy of hope that remains.
And what can we do? Nothing. Despite any desire to hide, steal away, cover up and refuse to acknowledge - things happen. And they keep happening. Good. Bad. Things do not stop. They do not slow. Only with ever increasing speed do they seem to occur.
But - when we can, we stop. We stop and enjoy. Enjoy the steady breathing of a child asleep next to you. Enjoy the smile quickly smirked and then gone. Enjoy the weight on the scale - higher than last time. Enjoy the comment that, you know what, I don't feel like I'm going to die anymore. Enjoy the tooth hidden happily under a pillow.
Maybe we can or can't handle the Big things. We won't really know until they're over. Until then, I'm going to try my damnedest to keep reminding myself to try to enjoy the little things. Because sometimes the little things are all you've got.
Monday, July 8, 2013
The Picture In My Head
A couple of years ago, my company switched from Lotus Notes to Microsoft Outlook. One of the things that came along with that was the availability if little "pictures" of people that come up when you're looking at an email or message from them.
Some people love it, and adopted it early. They put their pictures out there for all the world to see. Some people put out their pics, but used ones from so far away that you can't really tell what they look like. Others use logos of their favorite sports teams, or families, or pets. Still others are still fighting the trend, and refusing to put a picture of themselves out there.
It is helpful to me to see people's faces. We work so much more virtually now, it really is nice to put a face with a name.
What I've realized is that the Outlook pictures are really just an extension of something that (I think) is normal that we humans do all the time. We have a little picture of people we deal with, are related to, or think about filed away in our brains. When topics or thoughts turn to involve certain people, a little picture pops up in your mind. Maybe a fun time you had with them before - maybe a not fun time when you've argued or something tragic happened. But a picture. Probably you don't even realize its happening - it's just how your mind works.
I realized today that these pictures in your mental filing cabinet get updated. Kids grow up. Your parents age. No one stays the same - nor do relationship statuses, which also impact these pictures. I don't know how or why they get updated, but I now know they do.
I've realized all this because it hit me that the mental picture I have for Harper has changed. Not sure when it changed.
When I think about Harper now, I see a mostly bald little quiet girl. Shes sitting on the couch, picking at her fingers. I think the previous picture was of a slightly crazy-haired little girl who was verging on ADD, bouncing around, or losing it (it happens) when something didn't go right. NOT the child we have today.
Now that I type it out, it doesn't seem so dramatic, but it hit me hard that my little girl has changed, and so has my perception of her. I'm fearful of this. It makes me uncomfortable. Am I simply recognizing the change in reality? Or am I in some way "giving up" on her ever returning to the child she once was? Am I, in some small way, giving the cancer some ground, letting it into my mind in this way? What if she doesn't beat it? Will this be the picture I remember?
Or is it just part of is crazy journey we're on? Harper is growing and maturing every day - partly from normal "growing up" and partly this life-detour. Regardless of what I want, Harper will never been the same child - she will be changed forever.
If we have our way, we'll get off this detour and back on the main road. She will beat this, and be back to a "normal" little girl - as normal as she ever was. But I know, for sure, that she will not emerge unscathed. She will be forever changed by this experience. She will never be able to go back - only forward, carrying this life experience. Hopefully, carrying the strength gained through this trauma.
And when she is done with chemo, and her hair is growing back out, and she goes back to school, and this all becomes a memory - I look forward to updating the picture in my head.
Some people love it, and adopted it early. They put their pictures out there for all the world to see. Some people put out their pics, but used ones from so far away that you can't really tell what they look like. Others use logos of their favorite sports teams, or families, or pets. Still others are still fighting the trend, and refusing to put a picture of themselves out there.
It is helpful to me to see people's faces. We work so much more virtually now, it really is nice to put a face with a name.
What I've realized is that the Outlook pictures are really just an extension of something that (I think) is normal that we humans do all the time. We have a little picture of people we deal with, are related to, or think about filed away in our brains. When topics or thoughts turn to involve certain people, a little picture pops up in your mind. Maybe a fun time you had with them before - maybe a not fun time when you've argued or something tragic happened. But a picture. Probably you don't even realize its happening - it's just how your mind works.
I realized today that these pictures in your mental filing cabinet get updated. Kids grow up. Your parents age. No one stays the same - nor do relationship statuses, which also impact these pictures. I don't know how or why they get updated, but I now know they do.
I've realized all this because it hit me that the mental picture I have for Harper has changed. Not sure when it changed.
When I think about Harper now, I see a mostly bald little quiet girl. Shes sitting on the couch, picking at her fingers. I think the previous picture was of a slightly crazy-haired little girl who was verging on ADD, bouncing around, or losing it (it happens) when something didn't go right. NOT the child we have today.
Now that I type it out, it doesn't seem so dramatic, but it hit me hard that my little girl has changed, and so has my perception of her. I'm fearful of this. It makes me uncomfortable. Am I simply recognizing the change in reality? Or am I in some way "giving up" on her ever returning to the child she once was? Am I, in some small way, giving the cancer some ground, letting it into my mind in this way? What if she doesn't beat it? Will this be the picture I remember?
Or is it just part of is crazy journey we're on? Harper is growing and maturing every day - partly from normal "growing up" and partly this life-detour. Regardless of what I want, Harper will never been the same child - she will be changed forever.
If we have our way, we'll get off this detour and back on the main road. She will beat this, and be back to a "normal" little girl - as normal as she ever was. But I know, for sure, that she will not emerge unscathed. She will be forever changed by this experience. She will never be able to go back - only forward, carrying this life experience. Hopefully, carrying the strength gained through this trauma.
And when she is done with chemo, and her hair is growing back out, and she goes back to school, and this all becomes a memory - I look forward to updating the picture in my head.
Thursday, July 4, 2013
Fireworks
Last night we didn't stay up late. Despite the holiday today, we were due in the Outpatient Medical Observation Unit (OMO) at 8:30am for chemo. Today is day 4 of 4 of round 3 of chemo for Harper's Wilm's tumors.
Harper doesn't sleep alone anymore. She has shared a room with her sisters for years, but now she shares a bed, usually with me, occasionally Melissa and once in a while Grandma. She doesn't want to be alone - be it in a room watching TV or in a bed sleeping.
Harper was out, and the neighbors started setting off some small fireworks. Fortunately, Harper didn't wake up. While her anxiety has improved dramatically from when we started this journey (she hasn't needed a dose of Ativan for quite awhile) she still doesn't like scary shows or loud sounds. Fireworks qualify.
The fireworks didn't last long, and I thought to myself that it was very unlikely we'll get to enjoy any fireworks this 4th of July holiday - not with Harper the way she is right now. Maybe next year...
The Holiday morning dawned, and it has been raining on and off all day. With some luck, I thought, the local (neighborhood) displays will be smaller or delayed. Especially with the holiday on a Thursday, I'm guessing folks would wait if its raining and go for the weekend.
We made it to the OMO and settled in for a 6 hour day.
I've continually worried about Harper, and her lack of happiness as this experience has unfolded. She went from a very happy, loving, and relatively carefree child to a somber, quiet, grimacing one. It was a radical change, and one we've had a tough time adjusting to. I've wondered what is going on in her mind, and tried to formulate ideas of things to push her towards joy - things she might enjoy, or used to make her happy. Little has broken through dramatically. Even getting a horse, while making her happy, didn't drag her out of her funk. Nothing seemed to light her up - spark her fuse.
I don't know what about THIS visit to the OMO was different. We've been here what feels like countless times. We've gotten chemo, blood transfusions and stem cell apheresis here, and always somber. Always quiet. Usually sleep.
Today, after things were hooked up and flowing, Harper got out her iPad. She started drawing on it, with a Kaleidoscope app. She suddenly transformed. She smiled. She drew. She giggled. She even laughed. She showed us her drawings - grinning and describing what she saw in the pictures. She oohed, and aaahed as the colors changed, flowers emerged. It was incredible.
The nurses looked in. They'd seen her a lot, but never happy. Never joyful. Never laughing. They were shocked. They were elated.
Me? I saw fireworks. The prettiest, biggest, loudest fireworks I could imagine. In my mind, even for just awhile, a show was going on. Crashes of elation, booms of cheer and crackles of good spirits. I was in awe, my mouth hanging open. We laughed with her, soaking up the experience.
She's napping now, worn out by the excitement. Tired from the fun. She may not wake up and repeat it for awhile. Who knows? We may go back to searching for a spark again - I hope not. I hope it's a turning point.
On this 4th of July, we may not wonder at the site of exploding fireworks in the sky - but we've already wondered, and been renewed and refreshed by fireworks in her eyes.
Harper doesn't sleep alone anymore. She has shared a room with her sisters for years, but now she shares a bed, usually with me, occasionally Melissa and once in a while Grandma. She doesn't want to be alone - be it in a room watching TV or in a bed sleeping.
Harper was out, and the neighbors started setting off some small fireworks. Fortunately, Harper didn't wake up. While her anxiety has improved dramatically from when we started this journey (she hasn't needed a dose of Ativan for quite awhile) she still doesn't like scary shows or loud sounds. Fireworks qualify.
The fireworks didn't last long, and I thought to myself that it was very unlikely we'll get to enjoy any fireworks this 4th of July holiday - not with Harper the way she is right now. Maybe next year...
The Holiday morning dawned, and it has been raining on and off all day. With some luck, I thought, the local (neighborhood) displays will be smaller or delayed. Especially with the holiday on a Thursday, I'm guessing folks would wait if its raining and go for the weekend.
We made it to the OMO and settled in for a 6 hour day.
I've continually worried about Harper, and her lack of happiness as this experience has unfolded. She went from a very happy, loving, and relatively carefree child to a somber, quiet, grimacing one. It was a radical change, and one we've had a tough time adjusting to. I've wondered what is going on in her mind, and tried to formulate ideas of things to push her towards joy - things she might enjoy, or used to make her happy. Little has broken through dramatically. Even getting a horse, while making her happy, didn't drag her out of her funk. Nothing seemed to light her up - spark her fuse.
I don't know what about THIS visit to the OMO was different. We've been here what feels like countless times. We've gotten chemo, blood transfusions and stem cell apheresis here, and always somber. Always quiet. Usually sleep.
Today, after things were hooked up and flowing, Harper got out her iPad. She started drawing on it, with a Kaleidoscope app. She suddenly transformed. She smiled. She drew. She giggled. She even laughed. She showed us her drawings - grinning and describing what she saw in the pictures. She oohed, and aaahed as the colors changed, flowers emerged. It was incredible.
The nurses looked in. They'd seen her a lot, but never happy. Never joyful. Never laughing. They were shocked. They were elated.
Me? I saw fireworks. The prettiest, biggest, loudest fireworks I could imagine. In my mind, even for just awhile, a show was going on. Crashes of elation, booms of cheer and crackles of good spirits. I was in awe, my mouth hanging open. We laughed with her, soaking up the experience.
She's napping now, worn out by the excitement. Tired from the fun. She may not wake up and repeat it for awhile. Who knows? We may go back to searching for a spark again - I hope not. I hope it's a turning point.
On this 4th of July, we may not wonder at the site of exploding fireworks in the sky - but we've already wondered, and been renewed and refreshed by fireworks in her eyes.
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